whoops, wrong spot.
Comments
-
What a hook...ill be wondering forever now1
-
Sorry!
What’s the bcna forum equivalent of vaguebooking?
I'm having a rough time, so I was whinging/ranting/ugly crying in prose.
The problem with that is not being able to read where I'm actually posting my verbal vomit.
Thus the wrong place...0 -
Maybe not. Maybe the right place. If you want to talk about the rough time........1
-
@Kahm
I did read your post and was contemplating a response however it was gone!
You did say you have an upcoming appointment with a Counsellor.
You are struggling as the goal posts keep changing
If you are up for it post again. Rants are acceptable as no one here judges, we all get it!
The BCNA website is a wealth of information to help with where you've been and are at and readying for ongoing treatment
Take care
This link is the BCNA Helpline
"Contact us | Breast Cancer Network Australia" https://www.bcna.org.au/about-us/contact-us/contact-us/2 -
Ok then. Here's the original post:
****************
I was doing okUntil I wasn't.
I was rolling with the initial diagnosis (2bish invasive ductal). Two of my lymph nodes lit up on the PET scan.
Neoadjuvant AC chemo kicked my arse.
Then I started on the paclitaxel. I did five cycles of that before my onc pulled the plug; it wasn't having as much impact as he would like.
(I think it *was* working, just not all that much)
Surgery was brought forward to before Christmas. My surgeon was hoping for clear lymph nodes and a nipple-sparing mastectomy.
I woke up without my nipple and with a level II clearance because the DCIS went all the way to the front AND one of my sentinel nodes had residual cancer in it.
I opted for a reconstruction.
My recovery has been *ok*. Mostly. It's been three weeks, my drain is still in, and I'm still in pain.
Then I had my first appt with my radio oncologist and... I just lost it.
So many nasty surprises. So so so many.
Beyond cancer being really weird, that is.
The possibly permanent nerve damage was a surprise - I would have liked to have been forewarned about that.
Another thing I rather wish I’d known about was the high risk of needing further surgery after radio, given that I've had a reconstruction. I did actually ask the question in the “quick! Get you in before Christmas!” appt I had with the surgeon. “Give me the reasons why I wouldn't go for an immediate recon.”
Her list did not include the stuff about doing radio with an implant.
I was just starting to bounce from a new year of abject misery (hyperbole, yes, but I'm really not doing well). Then I had an appt with my onc again today, and I'm a mess all over again.
My surgeon reckons she got it all, the pathology showed that at least some of the chemo had an effect, a second PET scan right before surgery showed clear nodes and no mets anywhere.
But my onc would still only say that he was “fairly happy” with progress to date.
Those appointments are always challenging, because they're a reminder that this is serious stuff. But I just don't have any resilience left. I'm out of spoons.
I've had too many nasty surprises along the way, and I'm just not coping anymore.
I've made contact with the breast care nurses, I've got a psych appointment tomorrow, and I've outsourced everything I possibly can.
I just...
I dunno.
I'm just done.
Unfortunately, it's not done with me. The paperwork, the bills, the new information, the kids (they're so young!), flipping COVID - it all keeps coming and coming and coming.
My appt with the onc this morning made me feel like I'll never be done. That the worst-case scenario is inevitable. Frankly, I can't help but wonder if it's actually worth the struggle.
4 -
@Kahm
Unfortunately one of the worst parts of bc is that the bad news comes in dribs and drabs. But with a lot of hind sight, that may be better than being totally dumped with it all at the start. Two good moves, contacting breast care nurses and making a psych appointment - this stuff needs every bit of support and help you can get. And you will get your strength back, you have many reasons to do so, it’s just utterly normal to have days when you doubt everything. But tomorrow is another day, and may bring better things. Breathe, do something that makes you smile (however wanly) and hang in!1 -
Oh my gosh @Kahm, I am so sorry you are going thru such a hard time right now - you're really doing it tough. xx. As @iserbrown says - this is the place to rant & rave, cos we've all been there and we understand. We've got your back.
That is terrific that you have a breast care nurse & you'll be seeing a psych tomorrow - who should be able to talk you thru your emotions & give you strategies to help lessen the stress that you are going thru. When you see the psych, ask to be referred to the Hospital Social Worker, too - I had a real meltdown when I was going thru Rads as I'd just received a $500 bill for my pathology - I thought WTF? Surely this should all be covered by Medicare or my private health fund - but no. I had to pay it - so the Social Worker arranged for a philanthropic fundraising group who support cancer patients, to take care of that bill for me. It was just wonderful to have 'that' problem taken care of, in the middle of my rads. Just this year, our local hospital social worker has helped us with a couple of bills (with a different philanthropic group) who took care of our Rates Bill as my husband is Stage 4 .... it all helps! Try not to be afraid to put your hand up, to say that you need help xx
If you aren't happy with how your Onc is explaining things to you (or not!) - feel free to ask to see another Onc. I did. Quite a few of us have. My first Onc was just not interested in me & my treatment .... as if I wasn't 'sick enough' ... and you don't have to put up with that sort of behaviour xx. My current Onc is wonderful - and she also treats my husband too. Some have even swapped surgeons, too ....
Even those of us who have a relatively 'easy time of it' will drop the bundle now & then, sometimes for no 'real' reason, other than that we are just totally overwhelmed with being on that treadmill of diagnosis, tests & scans, surgery & treatment - specially in the early months .... and it just becomes overwhelming & unsustainable. xx
Be kind to yourself, take lots of deep breaths - you've been thru the mill & will need some time to recover from this, as well as your surgery & Onc disappointments xx
Do you have close family or friends who you can get together with, for outings (covid willing ...) and company? Can you get back to your hobbies, as you are able, after your surgery?
What area/town do you live in? We may have members there who you can connect with online (or even meet up with for a coffee, covid willing) ... They may also be able to advise you of what services may be available to you - often at no cost.
take care, you are not alone facing this .... lean on us xx.1 -
Hi @Kahm
Your initial post said “ wrong spot” but you have in fact come to the right spot!
We have all been there one way or another.
Everyone is different but we all seem to go through the essential stages of grief at the diagnosis.
I never cried so much in my life and all my friends, family and work colleagues would classify my as stoic and resilient.
Night Howls says it all - you will often reach your darkest moments late at night or in the early hours.
I had some counselling early on which really helped me and have a listen to the Charlotte Tottman podcast on here ( see “announcement” above ) - she is a physchologist who specialised in cancer patients who got breast cancer herself.
Reach out for whatever help you need , counselling, breast care nurse , GP friends and relatives and know that you can post any questing or rant on here, we are totally non judgmental and will do our best to help.
🌺2 -
"Podcast Series: Upfront About Breast Cancer – What You Don’t Know Until You Do, with Dr Charlotte To — BCNA Online Network" https://onlinenetwork.bcna.org.au/discussion/23866/podcast-series-upfront-about-breast-cancer-what-you-don-t-know-until-you-do-with-dr-charlotte-to#latest1
-
Hi @Kahm, I totally hear what you are saying. You are in the right place. You have been incredibly proactive and achieved a lot in a very short space of time in one of the trickiest times to be diagnosed. You are still very much in the frantic part of finishing chemo, surgery, pathology, recovery and radiation - all of those things. We can all relate in some way to how you’re feeling. You are going to feel done in, but then you will dig a little bit deeper and you will adjust and process this seemingly endless amount of information. Go easy on yourself, you are learning on the run and is totally ok to not be ok. My PS said to me in relation to my treating team, ‘we all have our agenda, but first and foremost is the actual treatment.’ I was very worried about reconstruction (I really wanted it), but, as I have learned, there are lots of options. I definitely know there are people who have radiation done with expanders in. Could this be a possibility for you? You may have done this, but write a list of questions - I had to as I was often overwhelmed. Take care 🌸2
-
Hello, I’ve sent you a private message 🙂2
-
@Kahm
Yep. It is a rolling shit show, that is for sure.
I can personally recommend screaming in the car. Find a quiet road somewhere and let rip until you feel ridiculous.
Does it fix anything? Well yes and no. I find it lets off some internal pressure. Do it somewhere you are not going to get booked for 'driving while distracted' or filmed by some weirdo. MXX3 -
Ok everyone, time for an update.
First - THANKS! You all helped. A lot.
Secondly, I gave up trying to go without the pain meds. Turns out being in pain makes a person very grumpy. Who knew.
I took all my pathology and treatment plans and EVERYTHING with me to the breast care nurse on Wednesday. I also moved heaven and earth (and so did they!) to allow my partner in with me. Having him excluded from that sort of thing was causing serious domestic strife.
Then the kids (5&8) went away for three nights, which was extremely reatorative.
Seeing the cancer psych was also helpful. I'll see her again next week.
Everything is still overwhelming, I'm still drained, exhausted, and depleted. I still (STILL!) have the blasted surgical drain in my side. I still have so much health admin to do it's not funny (with the bills, it's not the money so much as it is keeping track of everything and actually doing the task.)
But for now, I'm doing ok. Not great, but ok. And for now, I'll take that 😊7 -
Drains suck...
Keep plodding.
Mxx
3
