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Cancer support thread 90 - still the best threads no one wants to be on

1000 replies

LemonDrizzle10 · 14/09/2023 08:07

Last one filled up quickly!

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42
Silkiebunny · 11/10/2023 14:49

Glad its been caught early Octopus That first results meeting is totally overwhelming. Mine was also grade 2, hormone positive and HER2 negative. I needed a mastectomy which took the nipple as well. I would do whatever they feel best with surgery and don't be too swayed by the no radio after mastectomy as in my experience they do radio but radio is very easy but they said that to me too and did radio. I also had small breasts by their standards. Hope you can do something to take your mind off things though its very hard at the start with that.

Thanks ISA its always useful to know about real experiences with DIEP and implants. I didn't know body could reject implants. That surgeon was very pro DIEP and against implants. I had quite a few scars after my first two operations but they have gone completely I think now though stomach and breast combined must look a bit like you've been in a fight with a wild animal but am OK with that. Its good you already feel OK after first, that's what surgeon said to me. I think you can also get nipple tattooed on to avoid second op though not sure how I feel about that but good to have options.

I don't think you need anything special for hair to grow back LucysMam I have about twice as much hair as before in terms of width and it was already thick before. It varies person to person but I think generally if you had things like tough nails, thick hair before it comes back well, well thickly though it can be quite unruly with the curls.

Tilllly · 11/10/2023 17:23

@Octopus45 bath and early night for you!
I'm glad its relatively early stage

I had radio and it's fine
Faff going to daily appts but that's all
You can't go swimming for a while but other than that, its honestly not bad

Tilllly · 11/10/2023 17:23

I have an appointment with the respiratory consultant in the fast track clinic on Friday

ClashCityRocker · 11/10/2023 17:49

Good luck with that @Tilllly

Just catching up on the thread, sorry my phone only seems to let me do one tag on the app before it all goes wrong.

Silkie, sorry to hear about the wait. I can't believe things have gotten so bad with regard to waiting lists.

Can I ask, those who have had post treatment scans how long they waited for the results? Had an MRI last Monday and a PET scan last Thursday and haven't heard anything yet. I'm in for clinic on the 19th so hoping they're not waiting til then! Think there's been an MDT meeting since too.

I'm fluttering between 'oh god what if it's really bad?' And 'no news is good news'. In reality I know it's probably down to them being busy but can't help checking my phone every two minutes.

Do you call to get your results or wait for them?

Silkiebunny · 11/10/2023 17:58

Yes you aren't supposed to swim after radio for a few weeks but I didn't know so went to the lido a few days after and swam a mile or so but it was fine and they told me after its mainly don't go if got broken skin which I hadn't and they also said the water could irritate you but it didn't for me though I always bathe/ shower straight after swimming anyway.

Thanks Clash It seems to be the non-cancer wait lists but they class delayed reconstruction as cosmetic rather than cancer. Re wait for scans I have always been told results at next meeting in person so it maybe 19th. I had a CT last Monday and no results until 9th November though that's to check not gone to stage 4 (very unlikely to have) and I would presume they would call me in earlier if that. Hope you can manage to distract yourself in the meantime.

JlL2013 · 11/10/2023 18:02

@ClashCityRocker I've had two post treatment scans. For my three month one the had my appointment t made with the oncologist before the scan even happened, they then put it back by two week so assumed this was good news (it was)

However after my scan for a year post treatment I had the appointment scheduled for two weeks after the scan. However I got a phone call from the hospital 6 days after the scan asking me to attend the hospital that morning. I absolutely shat a brick as I was convinced it was bad news. It wasn't, it was all clear. The consultant was raging on my behalf.

I can just about look back and laugh now three weeks down the line but at the time I was in a right state. Really can't second guess the NHS.

Apologies for the errors am cooking a risotto.

lucysmam · 11/10/2023 18:10

@TopOfTheCliff @Silkiebunny thank you both. I may treat my mop to something nice but not overly expensive then!

Tilllly · 11/10/2023 18:11

@JlL2013

Thank you!!

Feeling suddenly rather glum, I think because I wasn't expecting any more appointments till next week and suddenly I am having to face it this week. And then I read your post finishing with apologies I am cooking a risotto, and it has really made me laugh.

SummerCycling · 11/10/2023 18:31

@doublec The NHS silicone prothesis is really good, but in hot weather I found it made me feel uncomfortable. I switched to a swimming one a friend gave me instead because it can breath more and felt less sweaty.

That's interesting you find the knitted knocker comfortable at night - I don't currently wear anything when I sleep, but it's not always easy to get comfortable. A missing boob feels so weird at night when you lie on that side doesn't it.

How funny we're bra size twins - although you're the slimmer twin with 28f😀

@Octopus45 You've got very good 'ingredients' there for a good prognosis.

I really enjoyed the eyelash posts. How observant of @lucysmam to notice one eyelash! I only noticed mine once they were all back, but really really short and tiny. Mine are still growing towards their pre-chemo length; they seem to grow very slowly. But it's wonderful to have eyelashes again isn't it. Lovely haiku @Florabritannica are you a poet?

@EachandEveryone It must be so tough not knowing what or where the primary is. Cancer makes me feel so insecure and I know exactly what my primary is, so I can't imagine the extra anxiety not knowing must give. I hope they can solve that mystery at least.

@DollyDaisyDo Thanks for your reply. I hope you continue to live a long and happy life cancer free!

@Tilllly how is your eye today? I hope it's feeling a bit better.

I saw an article today online about a woman who had exactly the same cancer as me: stage 3, grade 3, Her2-positive breast cancer. It sounds like a year after treatment they diagnosed Covid lung but it was actually the cancer back in her lungs and when they realised that she was then given 2 weeks to live and has now passed away. Very, very young, in her 30s.

It's unbelievable the doctors thought it was Covid (she tested negative) when she'd so recently had such a locally advanced and aggressive form of BC. Bad enough they don't scan us, but when symptoms start you'd expect them to think of possible cancer before anything else; poor poor lady and her family.

lucysmam · 11/10/2023 18:36

@SummerCycling I stand <that> close to the magnifying side of the mirror to put on false lashes 🤣🙈 otherwise I'd not have noticed!

JlL2013 · 11/10/2023 18:43

@Tilllly yep I've totally given up second guessing the hospital, none of the processes seem to be joined up.

Fingers crossed for you

Glad it made you laugh, here is a pic of said mushroom risotto with rocket

Cancer support thread 90 - still the best threads no one wants to be on
Florabritannica · 11/10/2023 18:44

@SummerCycling Not before today. Perhaps this is a side effect of Paclitaxel that nobody mentions.

Tilllly · 11/10/2023 19:24

@SummerCycling definitely less swollen, I've had a cold compress on it on and off, hopefully ok by morning
It seems like a collection of fluid more than anything else

@JlL2013
I had fish loads of veg and a baked potato which was perfectly adequate, but didnt look anything as nice as that risotto

lucysmam · 11/10/2023 19:50

<humph> I didn't get interesting side effects like poem writing with pax @Florabritannica 🤔

JlL2013 · 11/10/2023 19:57

@Tilllly fish, veg and a jacket spuds sounds great. I don't often cook risotto on a random Wednesday but was really craving it today. The left over wine did help a bit!

Tilllly · 11/10/2023 20:52

JlL2013 · 11/10/2023 19:57

@Tilllly fish, veg and a jacket spuds sounds great. I don't often cook risotto on a random Wednesday but was really craving it today. The left over wine did help a bit!

Eh? What's "left over wine"?
Makes no sense

ClashCityRocker · 11/10/2023 21:07

Oh your teas look and sound so good! I was doing so well in cooking and eating healthily. This week or so has thrown me totally off kilter. Just need to know what the scans are showing. Gah! I'm even pissing myself off with the doom and gloom

lucysmam · 11/10/2023 21:59

@Tilllly I'm with you there - left over wine is not a thing in my house because dd1 likes to share 🙄

@ClashCityRocker it's frustrating isn't it, allllll the waiting. I'm meant to be being scheduled a telephone appointment next week, to discuss my latest CT. So far...not heard a bloody word about when it is 🤷‍♀️

I shall continue merrily crafting to distract myself! I've taken up bracelet making for swaps at the Eras Tour film this Saturday...considering there are 3 of us, and I have made all of about 20 bracelets, I may need to up my game a bit!

Cancer support thread 90 - still the best threads no one wants to be on
JlL2013 · 11/10/2023 22:20

@Tilllly @lucysmam by left over wine I mean one glass in the risotto means I've got to drink the rest. Everyone's a winner.

Tilllly · 12/10/2023 02:34

JlL2013 · 11/10/2023 22:20

@Tilllly @lucysmam by left over wine I mean one glass in the risotto means I've got to drink the rest. Everyone's a winner.

Ahhh got you
Yes, definitely
Very dangerous to leave an open bottle of wine

Unex · 12/10/2023 03:55

Not sure if the protocol but I'm going to unceremoniously plonk myself on this thread
Not a thread I ever expected to be on tbh Sad
Diagnosed with ovarian cancer this very week
Possibly "something sinister" on my kidney
Waiting for scans and I suppose biopsy for staging
So er, hi everyone I guess

ajandjjmum · 12/10/2023 06:31

Hello Unex - as everyone will confirm, you're in the middle of the worst time - waiting. Sorry you've got this nightmare to cope with, but I know that the fantastic folk on this thread will support in whatever way they can.

Tilllly · 12/10/2023 06:47

Hello @Unex
I've only just been diagnosed and have been having various tests. It's an awful time, not knowing quite what you're facing
Keep busy
Keep your phone nearby
Get a notebook and write down stuff from every call/meeting - there's a lot going on in the early days

lucysmam · 12/10/2023 07:07

Hi @Unex

The waiting is definitely the worst bit! Hopefully it won't be a long wait & your team will come up with a decent plan 🤞 Definitely grab yourself a notebook & pen to keep handy - I note down all sorts of things. Wouldn't mean a thing to anyone else because a lot of it is one or two words to jog my memory but it's been handy.

As ajandjjmum says, we'll help if we can, there's so much knowledge & experience on this thread, and everyone is lovely.

Aah @Tilllly much more understandable!

I almost forgot the Abemaciclib tablet last night. Even with a dd2 reminder and phone reminder. I don't really want to keep the box out but might have to 🤔

Octopus45 · 12/10/2023 07:14

Hi @Unex sorry to hear about your diagnosis. This is a lovely, friendly thread, although it does move very fast. Take care of yourself as best you can, waiting is hard.

Thanks very much everyone for the positive messages yesterday.

Hope everyone has as good a day as they can.

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