Home Newly diagnosed



A tiny inflatable boat in a huge storm

RiotAtMidnightRiotAtMidnight Member Posts: 34
edited February 10 in Newly diagnosed
Like many others, here I am joining this not-so-sought-after club- and feeling very much like a tiny inflatable boat in a stormy sea.

I‘be just been diagnosed this week, although the process has been a bit back to front due to how busy things are during COVID. It feels like everything is happening all at once. Every day this week my understanding of my situation has radically changed. My brain is struggling to comprehend.

What I know so far is that it is 99.9% likely that I have inflammatory breast cancer. Even before the biopsy the doctor was prepping me for the likelihood of chemo starting next week (🙀👎💩). But now, having received my FNA and core biopsy, the appointment has been moved up to tomorrow. Understandably I am freaking the @&$! out!

My rational brain knows this is “bad but good”. Bad news, but good to have modern medicine, urgent care, to know this is happening in my body.

I’m struggling to keep up with the pace of things, let alone telling people in my world AND figuring out what to do as a self-employed business owner.

Finally I come to my question: for those of you who have been in this “new diagnosis shock” stage, what are the things you think can wait, and what are the things a person should focus on at this time? Eg/ should I be worrying about my business right now? How much should I let everything fall apart?

Well, that turned into an essay-length vomit of all my feelings but having read other posts, I know I’m not alone in this weird state of diagnosis mind!!!

(Thank you to all the posters on this site for your generosity in sharing your painful experiences, searching the threads has been really useful and helped me to gain a little more perspective with everything I read).
«13

Comments

  • RiotAtMidnightRiotAtMidnight Member Posts: 34
    Thank you so much for your reply @Abbydog. It makes me realise my brain is racing ahead very fast and I can try to slow that down. 

    These practical points and questions and really helpful. I can find little bits and pieces about being self employed and having cancer but boy, I would love to talk more with people who have done that. But that can come in time.

    I get my full diagnosis and treatment plan today, so I’m taking a deep breath and trying to remember that the urgency is “bad but good”- all of this is in order to help me. 

    Thanks again for your thoughtful reply. 
  • gumnutgumnut far north coast NSWMember Posts: 453
    Best wishes for today xo


  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,882
    @RiotAtMidnight It is important for you to still look after your business so now is the perfect time to think about how you will manage it (keep your mind busy while waiting on appointments). I couldn't work during my treatment and consequently we lost our business. You may be able to cope with working as many can, however it pays to have a back up plan. I didn't. Getting organised early is the way to go.
  • FLCloverFLClover Sydney Member Posts: 1,193
    You sound like you have the right mindset @RiotAtMidnight. I hope your strength continues to stay with you, and your burger with the lot helps you bugger off this bastard disease for good 🍔💪🏻💪🏻. 
    Good luck with everything. Ask here of you need anything 🍀♥️
  • RiotAtMidnightRiotAtMidnight Member Posts: 34
    I’m sure my bravery and mindset will falter many times @FLClover 😂 but I’m gonna try my best!
  • FLCloverFLClover Sydney Member Posts: 1,193
    It def will @RiotAtMidnight, and that’s perfectly ok too. As long as you pick yourself up again 😊
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,882
    @RiotAtMidnight I had adjuvant (pre surgery) chemo for six months, single mx  and full lymph node clearance one side followed by herceptin so our treatments are similar. I refused radiation as they could not tell me any advantages in having it. Were you hormone positive? Sounds like your business is in good hands. Well done!
  • RiotAtMidnightRiotAtMidnight Member Posts: 34
    Oof, that’s quite a ride @Blossom1961! Hormone negative on both counts. I guess we’ll see how it all travels and whether radiation is necessary, in time. Were you offered Pertuzumab as well as Herceptin? Apparently as a dual treatment it’s very effective, but it’s not on the PBS so even with shared cost from the drug company it’s $6400 out of pocket. I’ll have to read up and do some research but the doctor advised that if we can afford it, they recommend it. thank you again for your replies, it’s really helpful. x
  • AfraserAfraser MelbourneMember Posts: 3,572
    My treatment had some similarities but surgery first, then chemo then herceptin. Pertumuzab wasn’t suggested, may be a newer discovery that the two work well together. I was hormone positive (well, one lymph node was) so I’m now in my eighth year of Letrozole. I wasn’t running my own business but found working perfectly doable - fatigue and nausea are the ones that often knock people out of work and I didn’t have either. As it’s impossible to tell until you start chemo, it’s plan A and plan B territory. My fundamental plan was simply to do what was recommended. Costs need to be considered of course but, if possible, knowing you have done all that you can, is a salve in itself. For me, so far, so good. I’ve retired (because I turned 75) and haven’t travelled as much in the last year as usual or as I’d like (but that’s COVID!). I changed jobs a year after diagnosis, but only only to do something entirely new and challenging. So keep looking forward, life post bc may change but the changes may also be positive ones. Best wishes. 
  • BrownowlBrownowl Brisbane Member Posts: 20
    Hi @RiotAtMidnight. I’m an IBCer too! I’m sorry to hear about your diagnosis. I was diagnosed in December and started chemo within a week. 

    I’m being treated aggressively but have handled the treatment pretty well so far.  My biggest issue has been with the hormonal blockers though. Three treatments in and my rash is almost gone with no more swelling and pain. 

    I turned down a job offer when I was diagnosed based on advice of my GP. Based on how I’ve been going I could be working although in a more flexible way. So I reckon you could be ok continuing your business in some way. Everyone is different though and so is the treatment. 

    Best of luck. Happy to chat more if you’d like. xo 

  • ZoffielZoffiel Regional VictoriaMember Posts: 3,221
Sign In or Register to comment.