Overwhelmed new diagnosis

Dear @SharrynB,

from jennyss in Western NSW

Totally agree with all the comments above @SharrynB.

I told only family and close friends. I wanted some privacy to process it all but I did see a few people over the yr of treatment. It depended on covid and lockdowns as to whether I saw friends etc.

I did loose a friend or 2. Some people you will be happy to take on this 'journey' with you and hopefully all you want to share it with you will do just that. Just be aware that some may find it confronting and hard to deal with.

Make yourself the priority. I made myself the project manager of my health. I worked with my health team and took their advice. I exercised, ate well, took up meditation. I have always done yoga and pilates so did that when I could. It's ok to do nothing too. It can all get exhausting running to appointments and treatment. Don't forget to just sit or rest. You deserve it. I am sure you have done everything for your family so this is your time. 

Hi @Sharrynb, I’m sorry to hear about your bc diagnosis and it’s especially harder with Covid thrown into the mix!
I’ve had breast cancer twice,and while there’s no right or wrong way to tell friends and family,here’s what I learnt. I told everyone straight up with the first diagnosis  and found myself comforting them and answering all their questions which,to some,I didn’t know the answer.I was more selective the next time ie waited until I had a plan and so knew what was happening.I only told immediate family at first and then close friends. I didn’t tell others till afterwards.For 2wks after surgery you might not feel up to visitors and small talk. My husband acted as the door and phone’ bitch’! A group Facebook or email update is a good idea.The other thing I would say is that it’s really hard to predict how you’ll feel and react during this bc journey. Put yourself first and take time to heal- body and soul.xx

@SharrynB
Best wishes for your surgery and next steps. Who you tell, and how, can depend on what you do. Beyond immediate family, I found it easy to tell work colleagues - I worked through treatment - as I felt it was fine for them to know and I needed a heads up if I developed chemo brain (I didn’t)! Otherwise, most people had no idea - I wore an easy to care for wig, looked well and therefore the matter simply didn’t arise. For some, side effects make that too difficult. And while life as normal was important to me during treatment (I made bigger changes a year later), others find quiet reflection and a change of pace critical during treatment. Main thing is to do whatever works for you and don’t do stuff that doesn’t! The yoga mat is a pretty good start.

And right from the start, @SharrynB - also tell them that you may only be updating it (or private messages) weekly (or fortnightly) depending on 'where you are at' at the time (so they aren't making contact with you daily, to see how you are going)  .... as this bloody disease really mucks with your brain even more than the body!  

Pretty quickly, you'll work out a system that works for you. .... Your hubby can be the 'gate keeper' for you too - and don't be afraid to say 'no' if people want to visit & you are not up to it ...... 

Then again - if they offer support (anything from doing the washing, cooking meals, taking the dog for a walk etc) ... say YES!  Win/Win - they are helping you & it makes them feel useful.  Many WANT to help but sadly many just won't know how to approach it - and you may be surprised that some friends who don't know what to say, just won't say anything - and that may upset you a bit too .... but it happens.  :(  You may lose a few friends, but I reckon you'll discover many more, too,  along the way, who step up to the plate & help & support you. xx.  I've made some lifelong friends on the blog here (2 of us met up in Darwin the year before Covid took over ...) and a group of 5 of us will be doing the same when we are allowed to again!!  ;) 
xx

Very appreciative for everything you've just said @arpie.  Very helpful, with loads of wonderful tips & suggestions I will definitely be taking on board.  I'm loving the idea of a private facebook group where I can inform those important to me of where I am up to rather than talking about it everytime I see someone (unless I want to).

Thanks for the link.  I'll jump onboard and have a good look around..... but, maybe tomorrow.  I feel I have done enough "research" today and need some time out.  Where's my yoga mat?..... :) <3

Golly Gosh, you're having a hard time of it, @SharrynB.  But welcome to the forum - and the club I bet you never thought you'd join!  Having Covid on top of the diagnosis & surgery date changed & your son moving overseas has just made it all that little bit more difficult - thank GOD for Zoom and Messenger Video Calls.  xx.  I'm glad you are feeling better now from Covid.  Terrific that your hubby didn't get it.

Bad luck at your surgeon retiring ... but in a way - it may be to your advantage, as you'll have the new surgeon for all your follow up appointments as well as the surgery - which I think is a 'good thing'.  All the best with your new surgeon!

There's been an informative post on Public vs Private treatment - so jump on there too, as if you go private for everything, it can cost lots of 'gap fees' into the many thousands .... Many of us go private for surgery, then public for chemo, rads & Onc etc - but many surgeons work in both systems, so you get the same person anyway!  If going private, make sure you ask about gap fees, etc.

That's Great that you're hooking up with the McGrath Nurse next week - they are a fountain of knowledge & will probably be your first point of call with any indepth queries you may have ... but chuck everything up here as well & those with a similar diagnosis will be able to add their bits xx

Re telling people .... definitely tell your nearest & dearest first and then the rest on an 'as needs to know' basis!  I told most by email, as I am a bit of a sook &cry easily if anyone is sympathetic to me!  LOL  I didn't tell a lot of more distant friends (and even family) for some months, til after the surgery & rads & I knew I was on the right road to recovery ..... then some didn't find out for a year or more until my Xmas Cards went out (which shows that more frequent contact hadn't been made!  LOL) .... After that initial contact & advising them, consider updating them with developments via a group email - as it is tough on YOU to have to repeat everything to everyone individually virtually every day - it can wear you down, no matter how strong you are. 

Some members even started a blog or a special Facebook Page that people can check in on as it suits them .... so takes the pressure off you to make contact with them all the time.   My husband was diagnosed with stomach cancer in 2010 & I did the group email thing back then, too.

Well done on keeping up your exercise & yoga - it will all help with your recovery. xx

In your 'copious free time' ... jump onto this thread - it has a heap of links on it in the forum to some other areas ..... you can show us your garden, arts & crafts, your pets ..... and we even have some laughs on the Funnies thread & support from the Wise Sayings!   Lots of tips there for what to take to hospital with you - and a link to some 'tick sheets' down the bottom, for questions to put to your team at any point during your treatment.
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care & all the best - I hope you continue to feel better from Covid & that there are no long term side effects xx

The best resource is the BCNA website 

This link gives you the opportunity to read about your type of Breast Cancer

Types of breast cancer (bcna.org.au)

Take care and best wishes 

Thank you so much, @Cath62 for taking the time to respond to my post.  

In answer to your questions: yes, I have early breast cancer, grade 3, triple negative. (still not sure what all that means, due to not being able to discuss fully with my doctor and refusing to use Dr Google at all).  I have a telehealth appointment set up for next monday with a McGrath foundation nurse.

Iso is harder now as I am feeling fine, husband has remained unscathed thus far.  We can still talk from a distance but I think each of us could do with a hug.  We live in a house and I have been spending my time in the "Covid Caves" aka our bedroom & the study at the front of the house, while hubby has the rest of the house and sleeping in the spare bed.  

As yet, we are to rally our support team.  As we want to tell our dearest & nearest in person, the only person we have informed so far, is our son, which (again, rotten timing) relocated to Canada last week  :'(  Which is probably why I have reached out on this platform for support so early in the piece.

I'm not a big one on tv and have been reading more than usual.  I am keeping up with some exercise and yoga.  Both of which are very important to me.

I am on day 5 of iso so should be able to get out after the weekend.  Then the task of telling people - which I haven't even wanted to think about yet..... any tips on this would be very welcome.

Thanks again, I am very grateful  :)

Hi @SharrynB, so sorry you are going through this alone. What a hard thing with covid iso on top of your diagnosis. That is just terrible. Breast cancer takes us all by surprise. We never think it will happen to us but here it is.

You are right to vent here as we know how hard that first phase is while you are waiting for surgery and treatment. Waiting is the pits. I cried for 2 wks when diagnosed in April 2020. It was during lockdown. I was lucky to be with my husband so not alone so to speak but it left lonely all the same. I had surgery and chemo during lockdown too so wasn't able to have visitors etc. It was hard. 

Do you know if you have early breath cancer, the grade etc. Sounds like you have a treatment plan worked out. Where are you located? Maybe if you add that to your profile you may find other members near you for support.

How are you spending your iso time? We all usually say to people newly diagnosed to keep busy but that's hard if you are in one room or in a unit on your own especially if you are sick from covid. Try not to use dr google as there is so much misinformation out there and each of our cancers is unique to us. 

Are you a movie watcher or into series to help distract. Do you read? You may want to do some light exercises in your room to help prepare for surgery. Exercise is important to recovery from all this and if you can start after your covid symptoms stop that would be good. 

How's your friend and family support? Are there people you can call to chat with about it all. I had some good and bad support from family and friends but this online group was fantastic so it's good to reach out. 

Bummer about the surgeon. Pity you haven't met yet. Can you arrange a telephone health appointment with them as a video call? 

I really feel for your situation. How many more days are you in iso?  

Have you tried meditation? I took it up during treatment and found it most helpful.

Best wishes to you. 💐