A tiny inflatable boat in a huge storm

RiotAtMidnight

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).

Abbydog

Dear RiotAtMidnight,
Yes there is a lot to think about with this type of diagnosis.
You could wait for a full plan of treatment and full diagnosis.
Do you have a Stage and Grade for your cancer?
Being a self-employed business owner, probably does put some pressure on you to make plans.
You will have noticed that some of our treatments are similar, but each of our experiences can be very variable.
Some people are able to work throughout, with minimal time off. Others are quite incapacitated. No way to predict.
Not knowing the type of business you have, do you employ many people, or can you be replaced for odd days, or even a short stay in hospital?
You may need to hire or increase hours for some staff, to cope with your potential absences.
Do you have any insurances to help or fall back on? Eg Trauma/Crisis Insurance or Income Protection.
I've only spoken of physical/practical things, you've yet to know how you will cope emotionally. 
My story is in my profile, just click on my name to open it.
I truly wish you well with your treatments. 
Make lists of questions, for your Doctors. Have phone numbers ready if you need them, especially during Chemo.
Keep in touch if you want. There is plenty more advice, amongst us ladies.

RiotAtMidnight

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. 

gumnut

Best wishes for today xo

Blossom1961

@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.

RiotAtMidnight

Thank you @gumnut for your wishes, and @Blossom1961 for sharing your experience. I’m so sorry that you lost your business. I can’t imagine how distressing that was. I’ve started jotting some thoughts down about the business and keeping it running. I’ve started telling some colleagues and the love and generosity and offers of help have been very affirming. I have one staff member who literally started this week and I had to tell him on day two about what’s going on. He has been incredible.

I received my full diagnosis this morning and strangely I feel relieved, even though it can’t exactly be classified as good news. I have Stage 3, Grade 3 invasive carcinoma (inflammatory breast cancer) that is HER2+.

So it looks like I get the burger with the lot 😂. Chemo likely to start Monday for 6 months, along with the two HER2+ drugs for 12 months. Mastectomy and full lymph node removal on that side, and then some radiation. 

Things to be grateful for: noticing a sudden and dramatic change in my body; an attentive GP; to be born in 2021 in Australia; to have some savings in the bank; and to have the love and support of people around me. I know many people have much less, and I hope to do my part in supporting those less fortunate. 

FLClover

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 🍀♥️

RiotAtMidnight

I’m sure my bravery and mindset will falter many times @FLClover 😂 but I’m gonna try my best!

FLClover

It def will @RiotAtMidnight, and that’s perfectly ok too. As long as you pick yourself up again 😊

Blossom1961

@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!

RiotAtMidnight

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

Afraser

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. 

Brownowl

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 

Zoffiel

Well, @RiotAtMidnight , that was a pretty rapid transition between a rubber raft and what must feel like the 2021 version of the Titanic. Screaming fuckity fuck when the big waves hit is perfectly fine.

In the natural world storms don't last forever, it's all about hanging onto what ever keeps you afloat in the meantime. I just had a vision of me wearing children's inflatable armbands around my wrists while clinging to an esky lid in 10 metre seas. What ever it takes. Mxx

Zoffiel

Or, of course, you can be a battle ship...
https://www.military.com/video/logistics-and-supplies/naval-equipment/warship-takes-on-massive-waves/1910420040001

RiotAtMidnight

Thanks @Zoffiel - I’ll start fashioning a life raft from things I find around the house. So far I have half a plastic Christmas tree, a dog bed, some old sheets, and a broken tennis racquet... If I get my Macgyver on I just might make it yet.