Newly diagnosed and learning

Thank you for your replies.
I have been reading and reading - all the information sent to me, your posts, some library books, then spending time with my girls :)
Thank you for the advice about keeping organised. I had already spent my December spring cleaning and bought a wall calendar (I already have the pink@Unicornkisses), diary and all that and had my year full of lots of adventures as it is my daughters last year before she starts big school. I guess in a way I am lucky that I'm already organised a bit, most of our adventures were planned around local stuff as we don't have the money to travel far, so depending how Im coping we can probably do some of them.
I already have a crap memory so 'chemo brain' should be just great ;) 
I have booked in to get my hair chopped off next week and taking my girls along with me. I have always had long hair so I thought it best to take a step first and let them see so they don't get so shocked. 
Thank you for the advice about a thermos! I love my tea and am very picky about how it is made and I would never have thought of taking one.
I have started looking at etsy for scarves and such - although I sew myself, I have a room full of unfinished projects and this time its probably best to buy.
Which leads to the next question - I also knit and crochet - is this something I could do whilst getting chemo at the hospital?
My husband is coming with me for the first round and I know everyone reacts different so will see how I go but after that I have told him I would actually like to go alone. Everyone has said take a chemo buddy, but I rarely get time to myself that I don't mind just having a quiet sit.
I know Im in that quiet before the storm though and no matter how much I prepare it will still be unexpectedly rough.

Welcome Lillian, Just want to send you and yours big hugs and positive vibes for strength. You'll get through this and your lovelies will help you. Please know that whenever you feel down, fed up, scared, in need of reassurance we are all here as your cheersquad. Xx Cath

So sorry to hear your diagnosis. I recieved mine just under a month ago, now I'm home recovering from a mastectomy. It all happens so quickly. I'm 39 and also have a 1 and 4 year old, so I understand your fear. I'm still waiting for my stage and grade, which I will find out on Thursday. It's all so much to take in, but once your treatment starts you begin to feel coragous. You will surprise yourself. You can do this. Try to focus on one thing at a time and cuddle your beautiful kids extra hard. Let others help you and talk to whomever you can. There is a lot of knowledge, comfort and inspiration here.

Hi Lillian 
so sorry you've joined us the waiting is so hard the not knowing is scary.. but we are all here to support you I did not know what grade or stage till after surgery try not to think to far ahead 1 day at a time thinking of you 
Pam xx

I have a large calendar with big squares that I wrote all my appointments in once home. It also meant others knew when my appointments were and reminded me.. as honestly I just had an awful memory during chemo...I really needed minders.

I just bought from Big W a large planner that magnetises onto the fridge. It was $10 and comes in pink! (And blue if you prefer)
it is a white board type you can fill in the month and dates
it shows the whole month and a few days either side.
I got it just for my medical appointments.
it is excellent, I can see immediately what I have on, especially when on the phone making new appointments.
And my husband can see what I have coming up too, as he is coming to most of my appointments.
I still have a week to view diary too, which has all my other stuff in as well as the medical appointments.
I find doing these planning types of things help me get my head straight and fills the time between appointments.

Hi Lillian. I imagine your head is spinning at the monent and you would be feelibg rather anxious. I know myself I cried a lot ...especially at night when thete was nobody awake to see me being brave. Knowing the stage doesn't really help at this point for you. All you need to know is that you have breast cancer and you are going to do everything to fight it.

I had a week to a page diary to write in appointments and questions as it fitted in my handbag. I also bought one of those squueze box type fold out folders (pink of course ) where I kept pathology, scripts, info from surgery stuff, appointment slips, copies of medical certificates...iptaas forms (I live far away from a major public hospital )

Start to plan things like scarves, caps, wigs. (Google chemo headgear Australia) Things to do during chemo like books, dvds, colouring books or just someone to sit and chat with you.

You might want to do some pre planning for meals that can be frozen to make life easier on chemo.

Financially I was able to use my Long service leave and claimed against my life insurance under a trauma component. You may be able to look at sickness benefits and carers allowances...but mostly this is if for 6 months or longer. But havibg children it might be different.

Have you a plan for you babies when unwell. Call on friends and family...share the load. Start enlisting help. Even a roster of someone just to be there during your first week following chemo cycles when not so well. 

Okay...it's such a tough time for you. Planning helps to keep your mind busy.
I hope all goes well for you. Kath x

Sorry to hear yet another fallen prey to breast cancer but welcome. We're not a bad bunch to be associated with. Because your lump is 8cm I imagine is why they want to do chemo first rather than surgery and then chemo. Its to shrink it all down and chase down all the feelers and hopefully stop it all dead in its tracks before they go doing surgery. The type of cancer, your age and circumstance all play a part in what sort of chemo you will have. Some have rather challenging side effects especially to self image and losing hair and nails but some effect little more than flu symptoms. One pretty common theme is it makes you dog tired, not so much in needing to sleep but weary in the whole body. Its taking me about a year to recover from chemo. I just had blood tests which say everything's A ok after 10 months but I still need another couple of months where my energy levels not only come but "stay" a while. It does get frustrating and I feel I have aged about 20yrs in one year.

Good morning Lillian welcome to the site. not much to say as I can see the other ladies have already welcomed you and given you good advice. You are not alone all of us have been where you are now.. Start making a list to take with you  you see doc next, because your mind will go blank and you will forget what you want to ask. Be kind to yourself you have along trip ahead and remember your not alone we are here xxxx

Ah, Lillian, sorry to see you here. Don't stress too much about not understanding everything. It's a whole new language and until you get used to it everyone might as well be talking Swahili. Sometimes you have to take a bit of a leap of faith and hope the experts are doing their stuff. A bit like getting the car fixed, find someone you trust and hope for the best. You will start to figure it all out, we are adaptable animals and we learn stuff.

That said, it really pays to get organised. Get a good folder, a month a page diary and start filing everything. Ask for copies of every report. Get a business card from every doctor, specialist etc and put the date you saw them on the back. UR numbers (your patient number) for hospitals are really handy to know. They print out sheets of barcodes with that number on them which get stuck to all your paperwork, blood tests etc. Nick a page of them, they can come in really handy and if you ring a hospital and know that number (different one for each hospital) it makes life easier. Stick them to your phone and any personal items that you take for hospital stays.

Never, ever get admitted to hospital without taking a thermos mug. Ever. And take your own teabags and coffee with you if you are fussy. Learn to wait--which for me is still the hardest lesson. Marg xx