Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Yes exactly @TopOfTheCliff, it was quite jarring to be called my shortened name, it is a useful form of dissociation!

@isaxx can you ask if they think it's an anaesthetic reaction? Hot flashes post anaesthetic are common apparently and if that's what the doctors are thinking it might offer you some reassurance.

Post BC lumpectomy op question of my own- how long do I need to keep a bra on for? That's probably a stupid question 🤣 but they were so emphatic in the hospital about keeping one on and I don't think anyone actually told me how long that applied. Or if they did I've forgotten, which is more likely!!

I still have a drain and am under strict instructions not to touch any dressings so idk if my bras are still performing a support/protect role. But I am hot!! And itchy!!

I should have been a bit clearer that my own question was to anyone who knows not to isaxx specifically 🤦‍♀️🤣

Wow, this thread moves fast - I feel like I rejoined and blinked and it's pages gone

Welcome to all new peeps - I will not be the most helpful poster to you as I can hardly remember anything and am awed at the knowledge on here.

Twig all the loveliest MN people are on here but its not a thread you want to be eligible for - so sorry it must have been a huge shock - I hope they have an excellent plan in place .

Lucysmam you really do have a beautiful shaped head - looking fab

Top I have decide to give myself a lot of spoons - I have also decided that they will not be used for chores like ironing (!)

The Sarah Beany programme I watched - I felt it was a bit oh I have cancer but look I'm now all ok so quickly and that it was disingenuous as she is probably almost certainly a private patient - nothing wrong with that but be upfront and honest about it - the waiting times that lots of people on here have had /are experiencing are real . I would have liked something more in-depth , more factual stuff as well .

Nothing much to report personally - still awaiting my radiotherapy- do hoping (selfishly) that I can get it completed soon as I really want to book a holiday (insurance permitting) for DH , myself and DS.

Re wearing a bra question after lumpectomy - I was told no underwire bra ( I'm larger chested and it's my norm) . I received conflicting advice about what to do after the surgery - I didn't have a drain - I wore a bra at night for about 6 weeks I think. My surgeon was very clear that I had to leave my dressings on until I saw them again (if at all possible) - turned out to be 3 weeks after the surgery - I did ok with the main dressing but had to redress the sentinel lymph node dressing as it sort of rucked up. Sorry that you are having to do this in the current heat - hope it gets cooler soon

@AllotmentTime I was told to wear a post surgery bra for 6 weeks.

Siiiixxxx weeeeeks, ah BOLLOCKS. I mean, thanks for the help both of you 😆

Yes @AllotmentTime its six weeks night and day to support the tissues healing beneath the surface. The whole breast has been rejigged and stitched inside so needs support till it’s consolidated. That’s why you get a lumpy feeling under the scar for a few months.

@BeaLola the number of spoons isn’t negotiable sadly. You get what you get. My normal twenty spoons a day has crumpled to 2 or 3 currently but it’s my week off drugs so I am optimistic. Hoping for four over the weekend.

Top you deserve more than 4 spoons. Hoping you get your 5 for the weekend

I am so jumpy waiting for CT scan results as there is no imminent appointment to give them back to me. I was in a café and I had a missed call on my phone, it was from a mobile number, so unlikely to be medical but you don't know with people working from home after Covid. I tried to call it back but it didn't accept calls, and when I googled it, nothing came up. It's probably just a scammer, but it made me really shaky and spoilt my morning wandering around town doing jobs. I'm delivering training all day on Tuesday so I'm just going to have to block my phone from receiving calls or voicemails!

On the post surgery bra wearing, I had some M&S post-surgery bras which I bought in advance and were appallingly uncomfortable. I couldn't sleep in them at all. I did an emergency purchase of various cheap sports bras from TK Maxx, the kind you would wear for medium impact exercise. They were supportive but soft and seemed like a good compromise. I am only a D cup though, so might not work if you have bigger breasts and need more deep/shaped cups.

@SierraSapphire - waiting for calls is the worst. I have missed a call from the GP this week and am waiting for a call from the hospital pharmacy about my new drugs. So neither anywhere near as consequential as you, but I am still constantly on edge, taking my phone to the loo, not putting it on Do Not Disturb in meetings etc. I'm sorry it spoilt your morning, and completely get it.

@SierraSapphire I have a scan in a couple of weeks so am building up to it already and the aftermath of that sick fear every time my phone rings. I'm sorry your morning was spoiled. It's so hard as you can't settle and it's always 'there'.

It's horrible isn't it @dotty2 and @Fantasea. On the plus side I'm doing a lot of distraction tidying now so the house is looking better .

I got a bra from Bravissimo- it was heaven compared to the M & S one I got. Expensive but worth every penny, was comfortable to sleep in too.

I wore the M&S Flexifit non wired full cup bra in daytime (and still am) and the Flexifit crop top at night - as someone who sleeps naked I found it very strange wearing it after my surgery .

Waiting for phone calls /missing a call and seeing no caller ID is the worst- hope you get very good news when it comes

I struggled to find anything front-fastening in a suitable size (I have small boobs) and ended up going with a Nicola Jane post surgery bra. It's not too bad so I've stuck with it and bought another- it's okay on the axillary dissection (lymph node clearance) dressing under my arm and I thought it might be hard to find a bra that was comfortable there, so I've kept to what I know. Now that you lot have cheerfully told me I am in for weeks of it 😝 I decided id better be equipped!!

It's just wearing a bra at all at night that I object to 🤣

@SierraSapphire hope you get your results SOON so that you can stop the waiting. And hope they're good of course.

@TopOfTheCliff wishing you some unexpected spoons xx are you finding the cycle of when you have more energy or not in any way predictable? I suppose then at least you can plan around more/lower energy phases. It sucks though, treatment takes so much out anyway and when you're robbed of simple pleasures too...

Waiting for phone calls is the worst especially when there's no easy way to call back. I've travelled to appointments that could technically have been phone calls on the basis that I can't hack the waiting for a random time.

Second brachy today. Saw a different consultant and whilst my normal one said scans were showing a good response, this one was much more enthusiastic about how good they were looking. Probably just different bedside manners but it did perk me up!

Hopefully only one more brachy to go.

MRI today which was horrible but my Uber driver on the way there was so lovely and chatty and that helped a lot.

I hate that the hospital always comes up as unknown number - I’ve answered so many spam calls at inconvenient times so as not to miss something important because they don’t even leave a message (yes I know data privacy but still)

@ClashCityRocker that’s a good question . With ECT and FECTHP it was a predictable hangover after the IV lasting about 3 days then feeling wretched for 7 days then recovering feeling almost normal for a week.
The Cape is a constant level of fatigue like being sedated. I’ve been using my static bike and my legs seem fine it’s my head that is tired. In the week off my guts erupt with diarrhoea and cramp. It’s quite annoying that the staff all think it’s easier because it is for them! I can manage an hour or two of activity then I have to rest. I did think it was making me miserable too but this round I have been my cheerful self. I’m told the fatigue worsens with each round though. 😳

I am so pleased for you the brachy is going well. One more to go! Wow! I think a Thread tea party might be needed. We could all sit down at the same with tea and cake and cheer for you.

@TopOfTheCliff A thread tea party sounds great especially since it involves sitting down…and cake.
Fatigue is an awful symptom. There’s so many things here that need to be done but aren’t and my allotment is an absolute disaster. They will all have to wait - in reality none of the jobs are important.

Morning everyone, I hope you're all doing ok today?

@bringonyourwreckingball I'm terrified of the MRI machine - the CT's not too bad but the thought of being in the tube fills me with dread! When will you know the results?

@ClashCityRocker lovely to read your brachy is going well. I like @TopOfTheCliff 's tea party suggestion - I'll brew in my fancy pot, for the occasion 😊

I too hate the missed call from "private number" with no way to call back 🙄 Especially when phones these days identify potential spam as they ring & you still wonder whether you should answer just in case. Thankfully, most I've had so far have left a number to call back on...any others 🤷‍♀️ if they want to talk to me, they'll have to call back.

I'm braving town today with the girls for the first time since March, when all this started. Dd1 needs prom shoes for Thurs - hers (and her jewellery) have shipped but not arrived which is a pita.

Thankfully I had the sense to tell her months ago to buy a pair of reduced heels in Primark to practise walking in, so she can at least walk in heels. If we don't find anything I've suggested we bejewel them with what's left from her leavers shirt designing.

Dd2 has discovered make up so wants a trip to Primarni to see what's to be had...she goes through cheap palettes like there's no tomorrow, practising, but then never wears more than mascara and lip oil to go out 🤣

I might treat myself to something small when we're in there - only small though...I'm holding onto my money in the hopes of securing TS tickets for me and dd1 🤞I may have already acquired my outfit & earrings, and put thought into rhinestoning some cowboy boots, should we get them 🙈. I'm under very strict instruction NOT to buy GA if it isn't all seated. My gig preference is purchase a drink & bottles of water, pick my spot & hold onto my wee until after the artist I've paid to see. I'm not allowed to do that this time 🤣

Actually, dd1 text me last night with an interesting query about gig tickets - the PIP and blue badge apparently entitle me to buy "accessible tickets". Now, I don't need, or particularly want accesible tickets (or at least, at the moment I don't & I'm certain there will be plenty of people wanting them who do) but I wondered how many people who are actually reasonably ok to purchase GA or seated tickets, will try for them just because they're "entitled to" them 🤔. Just musing really, it's an interesting one to ponder (or I thought it was).

@lucysmam good luck with the prom shoe buying. I braved Oxford Street a few days ago for dress shopping with my dd but drew a blank - we did leave it really late though. Dd declared all the offerings as “old lady” stuff ;). Last minute online order done so fingers crossed it will fit!!

I also had the dreaded missed call from hospital but thankfully they rang back 10 mins later.

Not interested in gigs myself - I hate crowds but curious as to what TS & GA is as also I am really nosy 🤣

Hope everyone is well :)

@Onecattwocats TS - Taylor Swift/GA - General Admission (standing). Sorry, I never thought of that 🙈. I love a good gig - no one usually wants to go with me but dd1 is into music so she'll happily accompany me. We're off to see Lovejoy in Sept - I think I'll need to sleep the day away to make it to the end 💤

Hopefully your online purchase fits 🤞 Has your dd had nails/tan done? Mine is having nails done and hair...and entrusted me with tanning and basic make up...what could possibly go wrong 🤔 There have been practise runs but I think I missed around her eyes last night so she may have panda eyes for town 🤣

*sorry if my emojis drive anyone nuts. I tend to use them lots!

@lucysmam no idea when I will get results but presumably my surgeon will want to see them before he goes in which is a week on Monday.
Sympathies to anyone shopping with teens - dd2 has a prom-type event in a couple of weeks but has very sensibly decided heels are not for her and is wearing converse instead.

It's at times like these that I wish I had a daughter - prom shopping, nails etc - sounds hard work in retrying to get it right but also potentially a lovely shared experience,

I dropped mine off for a camp last night - I got an eye roll - cherished moments

That 'No User ID" when the hospital phones is frustrating isn't it!! Why can't they at least let us know which department?

Can I ask people about hot flashes. Do you suddenly get a few minutes where you feel awful, like a total malaise? Then after that the heat comes out and you sweat? Then when the heat goes you are ok till the next malaise attack strikes? That's what I'm getting from Phesgo, several times a day especially in the first 2 weeks after each treatment. Is it hot flushes would you say?

@TopOfTheCliff

That fatigue sounds awful. I had it at that level during EC chemo but at least that was limited to 2 months; grim as they were, 2 months is shorter than the time you are on Cape - sorry i can't remember, is it for a year? I hope it somehow lessens.

The fatigue I have now seems to be after I do anything, so for example I might meet a friend, then afterwards I crash for a day and a half despite being ok while actually out e.g. eating lunch. I have to make sure I don't do too much in a week and have enough recovery time. I'm wondering whether it's anaemia mixed in because my haematocrit is low each time they test at the end of the 3 weeks. But of course I had months of chemo, surgery, and 15 days of radiotherapy not long ago too.

@BeaLola

I agree about wishing we had daughters! With 3 DS, the prom experience is completely different, fun (2, one still to go), but less of that shared experience so lovingly described by @lucysmam (and others). It's a nice tradition; we didn't have that at my school - I'm too old I think 😂it came in later.

Completely and totally agree with you about Sarah Beany.

@lucysmam

Hope your cardiology appointment comes through soon and they aren't too worried about the missing beats, especially as it sounds like it's already a long term thing. Good they're checking though isn't it seeing as chemo can be tough on the heart, or at least I know some types are.

@ClashCityRocker

That is such good news about your brachy and the response so far!!

Yes, let's have a thread tea party!!