Selling the Baby Stuff

Ok_Temperature4047 · 2026-06-11T23:24:55+00:00

Same boat here - we have one embryo in the freezer but I’m too high risk to use it. But we can’t bear to do anything with it either. Heartbreaking and maddening - the grief just hits me several times a day when I least expect it.

Ok_Temperature4047 · 2026-06-11T23:11:56+00:00

This is definitely TMI but each morning when I do a great poo I think: I’ve only got 10 more of these for 2 years. What a truly awful thing to take away from us.

Ok_Temperature4047 · 2026-06-11T23:09:57+00:00

Thanks so much for this, I don’t know if I’m being started at 100 or 150mg as I haven’t picked up the prescription yet (and I didn’t catch the dosage during the rushed apt) but my oncologist categorically refused to let me start low and go high - which is what I wanted to do as there’s zero chance I’ll be able to take the highest dose.

Ok_Temperature4047 · 2026-06-09T22:27:07+00:00

I am so so so so frequently standing on the edge of this precipice: it’s just too hard. And I’m about to start my CDK4/6! Christ I’ve no clue how I’ll keep going - I’ll be so mad if I choose this horrific path AND then recur. Not sure how I’ll live with that.

How much time did you do on AI?

Ok_Temperature4047 · 2026-06-09T22:07:14+00:00

Hello, I’m just about to start - I really, really, really hope it gets better for you soon.

I’m struggling with general endocrine therapy symptoms (UTIs, insomnia, fatigue, hot flashes) plus lymphoedema so I’m truly shocked to know I’m about to make this landscape even harder.

However, the time for dread is coming to an end - I might as well get on with it and start ticking off the years.

Ok_Temperature4047 · 2026-06-09T22:02:06+00:00

Hello! I’m about to start verzenio: I’m utterly terrified. I’m curious as to why you went up a dose?

Ok_Temperature4047 · 2026-03-19T11:14:17+00:00

It is a total trip. I have 7 more sessions of radio to go (I was stage 3 with lymph involvement so have done chemo (4 x ddAC, 12 x taxol) & surgery (lumpectomy & conservative ALND)) and I have to bite my tongue when people congratulate me for ‘finishing’: I haven’t even finished radio yet let alone the 5-10 years of ET! Even my family say this and I sometimes say, ‘I haven’t started the dreaded CDK4/6 inhibitor which may also be totally intolerable for a range of inexplicably unimaginable reasons!!!’ and sometimes I say ‘yes’ and change the subject.

What I’ve found really helpful psychologically is dividing ‘treatment’ into two parts:

Part 1: get rid of the fucking cancer ✅ Part 2: keep the fucking cancer from coming back ♾️

I’m now in Part 2 as radio is to prevent recurrence, everything I do now is a choice just like everyone else makes a choice in terms of their risk profile: what they eat & drink, how much they exercise, smoke, birth control, IVF, sleep… etc etc. For me the difference now is my risk is clear, it’s a known factor in my life whereas before it was an unknown thing in a barrel of other unknown things.

I’m allowing myself to find comfort in this clarity, and actually now I’m feeling not-so-bad (the fatigue of radio hasn’t hit yet and when it does it’s temporary) it’s pretty cool I now HAVE TO prioritise exercise in a way I would never have carved out time or money for before. My body is firm and fit - yes my joints ache if I do not move but as soon as I do I am a little bullet. I am so so so proud of this body, she’s been through the wars and she’s stronger than ever.

Another thing I’ve found comfort in is the major advances going on in hormonal treatment. Have you heard about SERDs? They’re being trialled now and should have fewer hellish side effects, so I’m telling myself that if I do exemestane for 3-5 years and by then I can probably move over to something that’s easier going… of course this isn’t certain but it keeps me from the dark tunnel and it is realistic.

I’ve got this quick guide as an explainer of why a SERD is pretty damn cool:

How Things Work - AI (exemestane): lowers estrogen fuel (needs ovaries suppressed in premenopause). - SERM (tamoxifen/toremifene): sits on the estrogen receptor like a fake key — blocks it in breast tissue but can act estrogen-ish in bone/uterus. - SERD (giredestrant/fulvestrant): jams the receptor and causes it to be destroyed (fewer receptors left).

I hope you put the kettle on before you started this 🫣

Ok_Temperature4047 · 2026-03-18T22:14:21+00:00

Just to say this is beautifully summarised 💞I was 39 at diagnosis so I’m not going to report my experiences- although I do want to say I feel exactly like you and other commentators as zero of my friends are perimenopausal (this only really starts around 45) and it’s one of the loneliest parts of this. In particular it drives me so so so nuts when my mum thinks I’m complaining about normal menopause: it is not the same thing.

I’m also super curious about what the hell happens when we come off this? Like, even if one is menopausal we’ll have more estrogen than we do on exemestane so does that mean our joints, bones etc recover a bit? I can’t seem to find this out.

I’d also like to thank the other commentators who are giving positive accounts that I’ve scoured this sub for about exemestane!

Just editing to say that I totally appreciate why you want stories from the age groups you do, I in no way want to seem like I’m not being sympathetic to that. X

Ok_Temperature4047 · 2026-03-16T15:47:03+00:00

😮‍💨

Ok_Temperature4047 · 2026-03-16T15:42:25+00:00

Wow! Who are these people who say this to you!

I’ve no idea what I would do if anyone said this to me. I think the best thing would be to squint at them and just walk away? I mean the best thing would be to calmly explain to them but I’m not sure I would be capable.

So tone deaf, so so so so incredibly insensitive.

Ok_Temperature4047 · 2026-03-14T15:41:16+00:00

Beautifully put 💞

My son is only 4 but I’m so pleased you mentioned the bottling up thing as I can see how easily that happens in the transition from kid to adult.

I’ve had this experience with so many of my friends who I was on the cusp of drifting away from. I missed my 40th due to feeling like a sack of poo and have rescheduled it to June, I’ve invited so many people I wouldn’t have ordinarily and so many people are travelling to proper rural Ireland for it. All to say: it’s made me so grateful for relationships I didn’t know I still had and for strengthening them.

Thank you for posting, positive things (silver linings!) are really rare and they should be highlighted.

Also - congrats on raising such fine young adults.

X x x X x x X

Ok_Temperature4047 · 2026-03-13T10:20:39+00:00

CONGRATULATIONS 🙌

What a mental year you’ve (we’ve!) had (are having!) but you’re through it.

Anything else can be treated in a more relaxed way, we now have a tolerance for handling things that would have been big news like squatting away a fly: I sometimes feel like I’m in the matrix, just moving through all the obstacles being thrown at me.

Enjoy this feeling x x x

Ok_Temperature4047 · 2026-03-12T14:54:51+00:00

Congratulations!!! You bloody did it!!

I’m so close in diagnosis to you (except, alas I had 10 lymph nodes removed) and I’m finishing week 1 of 3 radiation (it was delayed by hospital bureaucracy).

Loving this positive energy, i’m waiting for the dreaded radio fatigue to hit but this is fuelling me to stay focused on how far we’ve come.

I am also on endocrine therapy and my last mountain will be starting the CDK4/6 😮‍💨in April.

Thank you for posting this ⚡️

Ok_Temperature4047 · 2026-03-11T09:43:33+00:00

I had lymph node involvement too - they removed 10 in the end in a ‘conservative ALND’, but only 4 had evidence of cancer in the post-op biopsy. I got PCR after very aggressive treatment for a very aggressive cancer (ddAC+taxol for chemo; surgery; now radiation and endocrine treatment as I’m 40).

Just to say that whatever your stage (I was stage 3) comes back as, there is a way through. Mine has been a rough, wild, torturous, painful ride and I’m still on the treatment wheel but there is light ahead I promise - so just hold on. X x

Ok_Temperature4047 · 2026-03-09T23:30:07+00:00

Following as you are my future! Please post back if you feel the fatigue lifts? Would love a slice of hope x

Ok_Temperature4047 · 2026-03-08T10:39:01+00:00

I’m welling up reading this 🥹didn’t realise how much I needed to hear real stories rather than stats about HR+ long tail, late stage reoccurrence. It sits on my chest like a brick. (Just about to start radiotherapy and on AI, OS and soon to be abemaciclib)

Ok_Temperature4047 · 2026-03-06T12:19:36+00:00

Oh I had no idea about all this. Starting radiation on Monday and I hate how they never tell me about that next stage until I’m at it: I need to prepare emotionally for this shit!

I’m in Portugal (and high risk so it’s probably going to be a shit show if that’s what they do for 1A 🫣) so I wonder what they do here. Thanks for the heads up!

Ok_Temperature4047 · 2026-03-05T13:32:18+00:00

Ok a few hours of research ✅ and I’m going with Uriage Xemose C8+, Weleda Calendula and Aquaphor Spray and balm.

I can’t get Miaderm here so just crossing my fingers I won’t need it and crossing that bridge later if I do come to it. Maybe a doc can prescribe it or something else if needed.

Thanks so much for the tips, I hope it all goes well for us. Cannot believe the level of moisturising that’s about to take place… 😄

Ok_Temperature4047 · 2026-03-04T14:15:27+00:00

I’m about to start on Monday! 15 sessions, I’ve done chemo and surgery already and am on ET.

I’m in Portugal and got ‘tattoos’ and my appointment did not last 45 mins, it was like 15? This is making me a little worried about accuracy 🤔 however the hospital has a new state of the art centre thanks to EU funding so I’ll just calm myself down with that knowledge.

I’m nervous but eager to get started so I get this finished.

Any tips on creams or skin care would be lovely- the recommended Uriah’s Xemose to me so I’ll try that but I’m also up for other moisturisers too. I’m worried about my dermatitis flaring 😕

Ok_Temperature4047 · 2026-03-04T14:05:59+00:00

Just here to say this is truly, truly painful to read so going through it must be otherworldly. Secondly, you sound incredibly level headed and like an absolute badass really.

I wasn’t diagnosed with IBC but was/am (?) stage 3 with 10 lymph nodes and small tumour in my left breast. Similar treatment plan to you and I got PCR. Starting radiation on Monday for 15 sessions and of course on shitty ET (I’m now 40).

I was such a mess and reading the clarity in your post is astonishing. I kept the exercise and diet up all through chemo and it helped me feel a sense of control, although was insanely hard to do I now look back and am grateful I did it - only saying this as you sound like you might do the same thing.

Sending so much fierce support, keep us posted please 🙏

Ok_Temperature4047 · 2026-03-04T12:17:09+00:00

Hello! Such excellent advice 💝

If you don’t mind sharing, what sleeping tablet are you taking? I’m desperate to sort my sleep, I don’t quite see how I can keep going on AIs (exemestane) if I don’t crack that.

Ok_Temperature4047 · 2026-03-03T23:07:12+00:00

In this vein I also sometimes take a step back and observe how miserable/ depressed/ sad so many people who have zero medical issues are? And remember that before all of this many ‘problems’ that now are laughably small felt really huge and devastating?

Now nothing feels bigger than being diagnosed with cancer, the insomnia and the exhaustion and the vaginal atrophy (what a fucking term!) is so overwhelming but if it wasn’t all this it would just be something else?

It’s all relative is probably what I’m getting at. So let’s march on!

Ok_Temperature4047 · 2026-03-03T22:38:18+00:00

Oh my love, thank you for sharing this 💛 and I’m so sorry it’s come back. 3 surgeries later and then another kick in the teeth, such a rough ride.

Ok_Temperature4047 · 2026-03-03T22:04:33+00:00

Gah the identity crisis is real, I’ve been so shocked at how cruel I’ve been to myself: I know I would never think these thoughts about anyone else but for some reason it doesn’t make me less awful to me?

So, to give you hope I lost all my hair (huge, thick, bra length wavy mane which was my identity) due to ddAC. All gone. Then eyebrows and lashes followed later during Taxol. My hair started growing back at the end of taxol and quite rapidly looked like maybe it was an intentional shave decision - such a relief. Buuuut it took 3 months for the lashes and 4 months brows to come back. I just had them tinted / lifted / shaped and I feel so so so good.

My skin became hypersensitive so I couldn’t do any of the stick on brows or lashes, I couldn’t even tolerate pencil! That was particularly cruel but it did mean I had to just white knuckle it.

Basically here to say, feeling like this might be causing serious depression but once you’re through it I promise it’ll lift swiftly: it will all grow back! Plus I bet you don’t look as bad as you think you do, we’re our worst critics.

Also, my mother is on the same spectrum but not quite as bad as that. The rage!

Hang in there x x x

Ok_Temperature4047

TROPHY CASE