Ideas for podcast for those just diagnosed

Please consider making the future podcasts in video format also, so those with hearing impairment can be included, perhaps subtitles?  Perhaps a signer also?  

Agree with all previous comments and particularly @kezmusc and @InkPetal references to greater control and the psychology of it all. Being a relatively recent member of this unique club and in amongst the reeds and weeds of my journey I find some days I just don’t want to reference another forum, podcast, booklet ... other days I’m endeavouring to garner energy to take back power - so the ability to compartmentalise the podcast into bite size topics /  chunks I think would be useful. It’s not that we are dumb and need to hear things slowly or many times . We may just want to be able to control the volume so to speak .....

kezmusc said:

I think one of the things I would have liked to have had at the beginning was a feeling of more control.  You get swept along so fast that sometimes you think you have no choice, you just have to go with what is recommended.  It's all so scary, your overwhelmed with information and fear.

This. Honestly dedicate as much time as you can to the psychology of it all. How you're likely to feel, how you can cope with those feelings, recommend seeking help and opening dialogues. Give out the reassurance that questions aren't rude. That what happens to you ultimately is your own choice and help people not to feel so powerless.

I didn't tell anyone about my diagnosis outside of immediate family who weren't equipped to talk with me about it for at least a month, and I wasn't even on the forum yet. I was just - alone. Even though family were present at my consults, I didn't get the treatment I wanted, because I thought what I wanted it didn't matter.

I would have liked someone to just talk me through any of it. I didn't google or youtube anything because I'd been advised not to, and if there'd been a link to something like this in the handbook it would have been such a comfort.

Thanks everyone for your comments - these are so helpful not just for our podcasts but for those newly diagnosed coming onto the forum.

I read my journal again yesterday and updated it. One of the most saving things was when I got a McGrath breast nurse. It all fell in to place from there.

I think one of the things I would have liked to have had at the beginning was a feeling of more control.  You get swept along so fast that sometimes you think you have no choice, you just have to go with what is recommended.  It's all so scary, your overwhelmed with information and fear.

Let people know not to be hesitant about asking  as many questions as they possibly can. Encourage them to realise they can speak up if they are not sure and see if there are other options. This is something that needs to be known at the begining instead of thinking you just have to do what you are told because that's the normal way and that's what's easiest for the doctors. 

Some people have no idea that breast care nurses even exist so that would be a good topic for sure.

Definitely clear information on costs etc re public/private and does the hospital run a patient travel scheme for remote travel?  The last thing you want to have to worry about at this stage is money.

Maybe a bit of a time line as to how things normally work in regards to scans, time delays for results, what's a hookwire, what's a core biopsy etc so you don't just show up to these things thinking you have to drive back to hospital with a coathanger sticking out of you boob :) 

Maybe a mention about the cold cap. 

How to get through that morning before surgery when you look in the mirror and realize that this is the last time in your life you are ever going to look like that.  
If you can get through on how to handle some of these emotions and that they are all normal you will have done a better job than just the technicalities.

So many women here (and myself) have been overwhelmed by there emotions during active treatment.  I think this needs to have a big emphasis.  Not just the shock of diagnosis but the rollercoaster that is the ongoing emotional upheaval.  Ways of coping.

The other main one I'm thinking of is how to go about telling people.  Who should you tell?  Methods of getting the info out there.

Ooooh...I just thought of another and it's disappeared from my brain (there's another again for you).  Oh, I know what it was - finances and accessing Super for Income Protection (or some policies may have a trauma component).

Ask " If money is not an issue what treatments and tests would you be offering me right now.... "

Yes, ask what is the preferred method of contact for your breast surgeon and oncologist. You will have more questions almost immediately after you leave their office...

Does your surgeon work in both public and private hospitals?
What is the best way to contact your surgeon, oncologist etc?
And yes being told all the main side effects of the hormone therapy would have been handy rather than having to hunt them out myself.
Also asking about what clinical trials are available that would be of benefit.