BC in other breast within a year of 1st diagnosis

[delly]

Morning girlywhirlies,
Unicornmummy - I guess you're waiting on results then are you? You any idea when you'll know? My fingers are more than crossed for you for that. Thanks for the explanation.

Snoozy - Hope you have a good "bashing it out" session with your BCN and it's helps with a very difficult decision. It's always going to be "scary", whenever you decide. But I'm glad to hear you haven't dismissed your initial feelings to get it all over and done. Would it be better "sooner", timing wise, or "later". And yeh, I'm sure the thought of meeting someone else is probably the least of your priorities right now.

Loadsa love xxxxxx

[Unicorngirlmummy]

Morning ladies, how are you? Tuesdays appointment wasn’t great! I had the ‘highly suspicious’ area removed yesterday. My consultant said there’s a small chance it could be a pocket stitch cyst but that it was very suspicious and that my options are running out 😬 I feel quite optimistic or maybe I’m seriously deluded!! Metaplastic is a rare cancer Delly. TN is triple negative so only chemo and radiation it can have. Hope you’re ok and have a good weekend xx

[Snoozysuz]

Thinking of you today Unicornlass, hopefully you get some positive news. You must be so worried.

I’m going to speak to my BCN to see what my options are regarding the mastectomy. Both my surgeon and oncologist have suggested in the past that I could just have the lumpectomy after chemo and then think about the mastectomy next year and part of me wants to do that, as the thought of going through it just now seems scary, but at the same time I think I should just go for it now and get it over and done with and move on. It’s a daunting thought trying to meet someone new, I think that’s at the back of my mind too.

Most importantly tho I need to think of the kids, and the risk of it coming back if I don’t go for it. At the end of the day they need me more than ever now.

I managed back to work 2 days last week and then luckily had a few days hols to take. I’m on sick pay now, things just keep getting worse. Have applied for PIP just waiting to see if I get it.

Hugs to you girls xx

[delly]

Another Heck for you then too Unicorngirl, flower.
Jeez, I hope Tuesdays check proves to be it's nothing serious, tho' I can full understand your worry. I don't mean to be insensitive, but what is metaplastic TN?
I'm amazed you've been back at work only 4 weeks after having finished your chemo. What do you do?
I'm still not good, but thanks for asking flower. My hands are becoming more of a pig - terribly frustrating when I've always been manually skillful work and diy wise. Get me upset, so keep pushing my mental state down.
Much love to you girlies. xxxxxx

[Unicorngirlmummy]

Morning ladies,

Oh Susan, so sorry to read you’re in such a bad place 😔 Good news that the chemo is working though. As Delly says, if your gut reaction was to have gone with the mastectomies & that it can be done whilst your kids are with their dad, that was always a big concern for you. You have to do what’s best for you so that you can move forward. Such rubbish timing 😐

How are you Delly?

I finished chemo 8 weeks ago, they decided after 4 that as the lung nodule hadn’t changed I’d stop at 4. After the Easter weekend I noticed a small purple protruding lump about 2 inches below my scar. I’ve got an appointment in breast clinic on Tuesday. I feel sick with worry. It came back quickly last time, it’s metaplastic TN & whatever I read isn’t positive. All of my eyelashes have gone in my bottom eyelids. I’ve been back at work 4 weeks & exhausted. It now feels like it’s all been for nothing. Sorry to be so miserable!

Susan, I hope you start to feel better soon from your chemo. I know that cancer is tough in relationships, to have gone off with someone else though, shame on her too! 😡 Big hugs xx

[delly]

Heck Snoozy,

Although that's great news on the tumour shrinkage, I'm soooo sorry to hear about your break-up  Such a shame he couldn't hack it, so to speak. You're having to be understanding to others difficulties, lacks, weaknesses in coping with. As if the vagaries of BC haven't been enough, 'ey. 

Is that now why you're having second thoughts to having the double recon? Or the shrinkage has changed things for you? Or are there other reasons too?? That's a helluva difficult decision.

Just a point to consider from my own experience, and resulted in a long awaited recon (7yrs!). Life can sometimes have a habit of throwing up other unexpected obstacles (and brown stuff!), that can then cause delays. With hindsight, I'd have opted and pushed for immediate recon to both, got it all out of the way back then when I was stronger mentally and a bit younger too. As it had a long term impact on my personal life/confidence, from a single person point of view. Prevented me from pursuing dating and a relationship. Not that it would everyone, that's just how it affected me. 

You had your reasons for your initial decision to have both masts and immediate recon. If it was your absolute gut - I'd follow it and go for it, if you're feeling strong enough to, and give the time to yourself to get sorted. Then go find that "better" guy?!

Sorry you're also having such a tough time chemo wise. Will those be your last two? Hope so. Hope you can find some extra strength from somewhere to stay strong.

Loadsa love to you and everyone

Delly xxxxxx

[Snoozysuz]

Hi girls hope you are doing ok, things not great here, chemo is flooring me. I made the decision to go for the double mastectomy and was allowed to wait until after my holiday in July, but my bf has decided that he no longer wants to be with me, that we have lost our ‘spark’ and has gone off with someone else.

So now don’t know if I can got through with the mastectomy, if I do if I can bring it forward as the kids will be away with their dad so will be easier being in hospital if they are not here, or just having a lumpectomy and thinking about the mastectomy later.

Not in a good place right now. On the positive front the tumour has shrunk from 21mm to 13mm after 3 chemos, I’m a week after chemo no 4 and feeling awful, but oncologist talking about lowering my next 2 doses which should help.

[delly]

Hi girls

Sorry I've been off radar.

Corr, daughters and rocky roads and pancakes - yum yum. Crikey Snoozy, you make your recons sound like a spare bits farm!! And not big enough implants??!! Lummey woman Awwwww, It must be sooo bloomin tough losing hair, lashes, eyebrows. Especially second time around. I'm admiring your upbeat attitude, even if you may not be feeling it deep down. You're looking pretttty good from here though, girl!!  Not so good on your own self needle admins. How did your daughters party go?? Wild?

Unicorngirly - Another Awwww, "dodgy chemo hair and not many eyelashes" for your daughter. I hope you're over your last postings side effects. How much longer have you to go, you and Snoozy?? What is it about boys/men, and emotions?? Thank you for asking after me, flower.

Oy, you two - I keep missin out on the kiddies Macs parties ;-(( !!

Much love to you both

Dellywelly xxxxxx 

[Unicorngirlmummy]

Hi Susan,
Oh what a long day 😕 Is that number 2?

My daughter has just turned 10. That’s what we did for her birthday a few weeks ago funnily enough, 5 friends, bowling, McDonald’s & a sleepover! Hope it goes well!!

Well done doing the injection 😘

I feel not too bad the last few days. It always starts almost straight away for me. This was number 4 & by far the worst one, the side effects really lingered this time. My legs & arms are still very achey but I do feel more human now!

Good luck with your picc tomorrow, rotten timing just after chemo bless you. It’s not too bad, remember to ask for a prescription for the plastic sleeve.

Hope the side effects are kind to you & good luck for Friday too, what a week for you! 😩🙈

Hope you’re doing ok Delly?

Lots of love xxx

[Snoozysuz]

Hey Unicorngirlmummy, stop feeling guilty, this isn’t your fault, we are just more than unlucky. How old is your daughter again? I know it’s hard but we are going through this to stay around for our kids. I’m going a bit mad and have organised a wee party in the house for my daughters 12 birthday and 5 of her friends this Friday, when I know I’ll be feeling crap, but we just get on with it for our kids don’t we.

Was there for 8 hours again on Friday, they hadn’t ordered my chemo until the could check a spot on my face I mentioned when they phoned me the day before to check how I was. I told them it was just a yellow pimple but what a drama it caused. I got there at 10.15 and didnt actually start the doxetaxal until after 2. Luckily my brother was on hand to pick me up and feed me a McDonalds. Also have an appt for Tuesday morning to be assessed for PICC line so hopefully get that in place soon.

My proudest moment was today when my district nurse didn’t turn up so I had to do my filgrastin jag myself. Was such a big thing for me as I hate needles and yes I cried after it. Think it was tears of relief tho. Just don’t know if I can do it every day but we’ll see.

Hope your ok, you’ll be feeling pretty rotten now won’t you. I’ve been ok but it’s about day 5 or 6 it kicks in. And how are you Delly? Hope your doing ok too.

Much hugs. Susan xx

[Unicorngirlmummy]

Hi girls 😘

Oh, so sorry about your hair Susan 🙁 As much as you prepare yourself it’s still upsetting. Even more so when you’ve done it before.

Ah, how lovely your daughter making pancakes 🥞😋 yummy!! Don’t be too impressed, it was my good week last week &!I feel so guilty that I’m putting my family through this again. I know it’s not a choice. I can’t help but worry about if was to come back & if I wasn’t here for her. I’d hate her memories to be of me being ill all the time (with dodgy chemo hair & not many eyelashes 🙈😩). My son is 23 so we’ve done all the fun stuff. He doesn’t really do emotions either! I just feel that while I feel well I need to do some special things with her. Side effects really lingering for me this week & I feel awful. She had tears at school yesterday as I wasn’t well enough to take her to school. She really panics if I’m not 100%. They took bloods when I had my picc flush earlier.

I didn’t realise there was just so much involved in reconstruction 😐

As Delly says, no harm ringing LGFB. Mine was meant to be a few weeks ago but they cancelled it last minute. They said they’d call when they have a date for the next one. I was also meant to do the moving forward course last year after the first time, that was cancelled too due to lack of interest!!

Good luck for Friday, annoying you couldn’t get your picc in time for your pre chemo bloods.

Hope you are ok Delly?

Lots of love xxx

[Snoozysuz]

Hey girls, sorry not been on to update you, had a rough couple of days. My hair started falling out on Friday, so my bf shaved it off last night. My wig is lovely and I know I’ve done it all before but found it a wee bit harder this time. Anyway it’s done now and came in to work and everyone loves my new do.

Thurs was ok. The surgeon has ruled out implants as they don’t do them big enough 😊. I didn’t want implants anyway. He’s explained how they would use fat and muscle from my stomach and how it would be best to get them both done at same time as if they just do 1, they would have to discard the extra stuff removed from my stomach, and then they would have to take it from somewhere else which I don’t want. Then he threw a spanner in the works and said I could just have a lumpectomy this year and have a mastectomy in the future. But my cancer grew within the 3 months I was visiting the oncologist as part of a trial, and I’m not doing that now, so I would be scared another cancer grew again. So I’m almost certain I’m going for the double in July. I have an appt with plastic surgeon on 5 March so need to decide then so she can put me on waiting list and she will go over the “free flaps” recon that I will be getting. The good thing is they are letting me delay the op as I should be getting it in June, but my son has exams and my daughter will have so much going on with last few weeks of primary school. Also looks like I’ll get to Fuerteventura, but op could potentially be day after I get home.

Anyhoo I’m feeling much better physically, until Fri at least when I have round 2. Haven’t had any word of getting PICC line in so like they’ll have a battle for veins again.

Unicorngirl you are so organised pre chemo, I’m not as good as that. The kids have been off but we didn’t get up to much as I’m skint. Had to fork out loadsa cash to school for Jens school camp and school photos and leavers hoodies. It’s never ending. Taught her how to make pancakes so we’ve had loads last week. She was making them for breakfast.

Dellwelly, those sunrises/sunsets sound amazing. I get a good sunset over the Forth towards Fife, but once it goes low I can’t see it for houses.

Hope you are both doing ok, hope chemo no 4 isn’t too hard on you 🦄 girl.

Speak soon, big hugs. Susan xx

[delly]

Hey Unicorngirl - Well done on No.4. I'm stunned on what you're going through, but still "Going out to play" with your daughter. My Dad used to be the one to play, so I'm even more impressed you're a play Mummy.
Snoozy - How did your appointment go? Are you okay??
Lots of love, Dellywelly xxxxxxx

[Unicorngirlmummy]

Hiya,
Chemo number 4 done ✅ It should have been yesterday but after waiting 2 hours they sent me home because the cold cap machine was in use. Can’t be helped I know but after my usual pre chemo mad house clean/beds stripped/washing all done & ironed, not to mention the psyching myself up it was quite annoying! Never mind, it’s done now.

We’ve been to an outdoor play area Delly on Monday, skateworld on Tuesday, just a dog walk Wednesday then she went to a friends & then when I came home yesterday we made rocky roads & scones!

The sunset sounds gorgeous! And that’s a lovely saying 😊

Hope your appointment with the surgeon went how you wanted it to go snoozysuz.

Have a good weekend lovelies 😘 xxx

[delly]

Hi, me Darlins
Yeh thanks Unicorngirly. I love that woman to bits and back to a whole again. That's one of my favourite sayings. Pretty much sums up the strength of feelings.How are you today?? What ya been up to with your daughter then, albeit germ infested. You didn't say. I'm asking becauseJust watched the most amazing sunrise this mor and it's mow beatufully sunn n. If I stand and look left out of my bedroom window, I'm looking at beautiful Derbyshire hills and Macclesfield Forest mile away. The sun/dawn rises directly behind. Oooo, I'm such a romantic!! It's true.
Appointment today Snoozy. Waitin to hear, flower.
Lotsa love xxxxxx

[Unicorngirlmummy]

Hiya,

Ah Delly, that must’ve been lovely catching up with your bestie. Good to hear you’ve had a good few days. Sorry you can’t sleep though. You’ve lots going on 😕

Susan, well done getting through cycle 1! I can sympathise with the toilet issues 😩 How lovely of your daughter making dinner 😊 Hope you managed to get back to work.

I’m ok, chemo number 4 tomorrow. Have done some nice things with my daughter the last 3 days, all germ infested places though 😬

How is walkerlass getting on?

Big hugs to you all 😘 xxx

[delly]

Hi Girls

Oh Unicorngirl - How are you getting on? I didn't thank you for your hug and concern. I'm so sorry and thank you for it flower. Am a bit better last few days. Been getting out and about a bit more (escaped). Had a meal out and lovely evening with my Bezzie last night. Hadn't seen for a year due to me being mentally out of commission, so had a lot to gas about.

Your poor bums !! Is that TMI?

Snoozy - Glad you got things a bit more sorted appointment wise, plus that you aren't feeling so pressured. I'm sure your surgeon will fill you in on some of it, before your plastic surgeon appointment. What did your daughter cook last night. Awwww, what a flower. Why don't you contact whoever organises the Look Good Feel Better course and ask them if it would be okay, rather than feel you might be pushing someone nose out?

Am off for a very early night - no sleep last night and my eyes are going already.

Keep kicking you girls. Gently, until you get your strength back.

Lots of love, Delly xxxxxxx

[Snoozysuz]

Hi girls, I’m sitting writing this on the loo, chemo constipation is a biatch! Had a bad week, but managed to avoid any major mouth problems so far, difflam is amazing, and constant teeth brush after meals has helped. The benefit of 2nd time, you know what to look out for. And I’ve lost 9lbs in a week. 9 fecking lbs. don’t worry it’s not as if I don’t need to lose it, I’ve just found I’m not hungry, and taste buds have started to go. Our valentines meal was lovely, I was craving fish for some reason. And sticky toffee pudding. My mans away in Benidorm now. Rather him than me. My daughter cooked her 1st proper meal tonight and it was lovely, going to teach her how to make beef stew tomorrow while she’s keen.

I have my appt with surgeon on Thurs, but I also have one with the plastic surgeon in March so I don’t think I need to make any final decisions just yet. My chemo doesn’t finish till end of May so I’m thinking and hoping July for surgery, after our hol to Fuerteventura which I really hope we don’t have to cancel. My oncologist said the from my previous history with tax that the it should kill the cancer completely, so I’m hoping I can have a bigger gap between chemo and surgery this time. My son has his exams in May/June so really want to be here to support him, and be fit. Will see what they say.

I’m hoping this is me on the up again before 2nd chemo, going to go back to work on Wed, someone is ill at work and not staying off so I ain’t going near for now.

Delly thanks for the advice, have arranged to see my BCN after seeing my surgeon to go over everything. I’m definitely getting them both done, he said I could get 1 done now and the other at a future date but I just want it out the way.

How you doing Unicorngirl? How many chemos is that now. How’s the mouth? It’s horrible that it’s the way in and the way out that suffers most. I have to say apart from the inconvenience of the jags I think in hindsight they are better than the 1 jag, as the bone pain isn’t nearly as bad so far. Last one was today. I had one temp spike on sat night, I had terrible belly cramps and temp was 39.4, but was middle of the night so rode it out and temp went back down in morning. I know if I’d phoned they would have whipped me in to hosp which always makes me worse.

I have a question, is it cheeky to do the Look Good Feel Better thing again? I loved my last session but it was only last year. As this is a separate cancer I thought I would do it again. What do you think? Am I being greedy? And if you haven’t done one you should, lots of lovely free make up.

Big hugs to you girls, keep strong. Susan 💞

[delly]

Sorry girls, been having techy probs with b/band so haven't been able to log on last few days. Felt like my arm had been cut off. But thats all trivia compaired to what you two are going through.

I'm okay thanks unicorngirl, just a bit of a blip. I often have nights, sometimes two, where I don't sleep, just don't get or feel tired. All part of the Bi-P symptoms. No, your not being nosey - you're being caringly enquiring, thank you lovey. Just need to feel I'm in a more stable position to go have another appointment with surgeon, then be able to maintain it long enough through to a surgery date, how ever many weeks following. It's the maintaining it that's often the prob. Your mouth probs sound awful, and the rest of. Think I'd rather have the 2 x bottles and massive bag of crisps anyday. You poor girls.

Snoozysue - I think you're doing amazingly well. Yey! on the wig. It really sucks for you lot, this chemo lark - extra tough stuff. You're gonna have to pull your finger out and have some serious discussions about your surgery options, if you're feeling so uninformed, darlin, preferably with surgeon, or at least go have a sesh with your BCN. Get all the gen, and take someone with you to take it all in as well. I've mentioned nipple options to you, but you need that direct surgical info on what options YOU have. The more info you have, the more informed a decision you'll make. You seem to keep fobbing it off and there's no point really discussing it with your BF, if you're not fully informed of what your options are, is there?. Or perhaps you can have THAT discussion with your surgeon on the 15th? Have you been given a date for your actual surgery yet?? Please don't tell me it's the 15th, is it? If you don't feel informed on mastectomies and nipple recon, and haven't been given it - please go get/tell these people you need more info, sweetheart. You're not asking for anything out of the ordinary, or demanding. But am guessing your head divided in so many different directions with having young kids to look after, along with coping with all of this sh*t as well!!

No darling, No exp of chemo or Picc lines at all, but there are loads of girls on the chemo threads who have, because of the same vein probs. I don't have any probs with needles Susan. Have you previously looked into any of the chemo threads from your time with it before??

I wanted immediate recon and only ever wanted implants, which my initial surgeon was more than happy to do with my first boob. But I had a change of surgeon, recommended by my BCN, who was more up to date with self tissue recons and a very skilled surgeon. There was a bit of a mix up with what procedure I wanted i.e. not self tissue, just implants. I had smoked which the original surgeon didn't have an issue with and implant surgery, but the second did, thinking I was wanting self tissue and the circulation implications when connecting up tiny blood vessels. Basically, if I'd stayed with the original surgeon, I'd have had the immed implant recon. I've never had a healing issues, nasty gashes to legsetc. my masts scars healed up in a couple of weeks without any probs, a major knee op healed quickly and well. I just put it down to a miscommunication of what I was actually wanting - basic implants. So make sure you bash ALL the info out, and get it straight. 

Hey, you're not at all rambling. Please don't ever think you are. You're both having such a tough time of it, I'll say. Am impressed with your eldest daughter. 

How was your romantic early Valentine meal??

Hope you're both having a better day today?

Lots of love to you xxxxxxx

[Unicorngirlmummy]

Hi Susan, well done getting the first one done 😘 What an awful long day 😕 I was crying as I walked along to my unit for the first one. It’s overwhelming to have to do it all again.

I’ve got a picc as my veins are rubbish. If you don’t like needles it’s great as bloods will be easy. It’s the local anaesthetic which is the worst part. You’ll be all covered up so you won’t see the needle. It’s a pain having to go back every week for a flush & dressing change though. They’ll give a prescription for a limbo which is a rubber sleeve to wear whilst showering. If you’re having six cycles it’s worth considering & it saves a little bit of time as the access is there already.

I read that the docetaxol caused diarrhoea so I didn’t take any laxatives the first time. It was quite the opposite 😩 Ive needed 3 sachets of movicol a day all week to get going! Just for the week after chemo though. My mouth isn’t right, I’ve got difflam mouthwash, nystatin & a gel type wash. It then gets the dry bit where you wake up like you’ve had 2 bottles of wine & a family bag of crisps!! I also have 10 days of injections. I find if I forget & do it later the side effects are worse. About 8-8.30 is the best time for me. The sister in the ward advised that too. Also to take it out 30 minutes before so that it stings less.

Why don’t you join the January or February thread, some of the ladies have mentioned just one injection, if you found out the name you could ask your oncologist? Going to the surgery every day you can do without that!

I couldn’t have my reconstruction straight away because I only finished radiotherapy in April & you need to wait 18 months. Also became recurrence happened so quickly they wouldn’t do it until oncology are happy. Well done making your desicion.

Hope you have a lovely early valentine meal today.

Ps, the comment about not wanting to fall asleep made me laugh! 😂 Lots if love & I hope you’re feeling ok xxx

[Snoozysuz]

Hi girls, well yesterday was a pretty epic day. Got to hospital just after 8am, left Just after 6pm! I totally misunderstood my oncologist as Herceptin started yesterday too, and carries on until Jan, but after chemo finishes in May I get it via injection instead of thru drip, but they’ve given me Sat appts. Will have to try change that as the trek into hospital is bad enough during the week, would really like the weekends off.

Anyhoo my veins are rubbish, and I have a real fear of needles so it didn’t start off fun. The first attempt to get cannula in failed, so I ended up with it in the inside of my wrist which wasn’t comfy. They’re suggesting I get a PICC line put in to save me future pain (I cried for 1st time during chemo, never did it last time round, think it all hit me very publicly and very snottily). Have you girls any experience? I hate the sound of it but I know it makes sense.

So I had my Herceptin, then flush, then steroids, flush, Piriton due to having a bad reaction to doxetaxal last year, flush, then they finally started the chemo around 2pm for them to take it off again and give me a hydracortisone drip, flush, again with doxetaxal very slowly, sped up after an hour, then another hour of that, flush, carbo and final flush. My bum was numb, my arm was numb and I was scared to snooze cos I snore. But anyhoo I was done and happy to leave when they hit me with the next bit of bad news. Instead of getting 1 shot of filgrasim (not sure how you spell it, I just call it the bone jag cos it hurts my bones), I’ve to get 10 days of it after each treatment. Think they changed it as I ended up with so many infections last time. They were expecting me to do these myself but after seeing my reaction to the needle earlier they arranged for district nurses today and tomo and I’ve got appt for my docs on Mon. I saw the needle today, I tried to watch her do it but just can’t. Am I being a wimp, have you girls had to do it, It’s just so inconvenient but I just know I won’t be able to do it.

Anyway I’m feeling fine today, apart from the steroid munchies, heartburn has started already and niggling joint aches. Dreading the mouth problems starting the most, my bf is taking me out for early Valentines meal tomo so I can enjoy it. Also not looking forward to whatever delights my stomach wants to do, I was badly constipated with the FEC last time, but had the opposite with the Tax, so who knows.

It’s made me realise that a mastectomy is the best option, sitting there in that ward again made me realise that I feel I haven’t been away since Jan last year, I need to get rid of it once and for all and cut my chances of this coming back. I don’t think I even care about nipples anymore, as long as they give me cleavage.

Sorry for rambling but I can’t sleep and have only had kids for company today. Unicorngirlmummy I actually find it easier being at my worst when kids are off, as at least I don’t have to get up and get them organised for school, but my kids are a wee bit older, nearly 12 and 16, so I can be lying about and they just get on with it. My youngest has been a star today making me cups of tea and getting my drugs and water ready. She even made her own tea.

Have the given you anything for your mouth 🦄girlmummy? Is it ulcers, or gum pain, or both? I had terrible problems last time which was the root of my infections so I asked for a mouthwash right from the get go this time, none of this bicarb nonsense? It makes my tongue numb but really helped last time, hope it helps prevent it completely this time.

How are you doing Delly, one thing I wanted to ask you both and hope you don’t mind, but why did you not get your recons right away, is that because of the type of op you got, or a NHS trust issue? Just being curious, hope it’s not too nosey.

Well I’m going to try and sleep now. My bf is a taxi driver and will be in about 5am and he likes a blether when he comes in, better try and get a head start.

Love and hugs to you both. Susan xx

[Unicorngirlmummy]

Hello,
Delly, why just ok? You always post during the night, do you work nights or can’t sleep? Your diagnosis was a while ago then? Have you done any more about your expanders? Hope that’s not too nosey, you seem to be giving hugs to everyone else & it sounds like you need one 😘

Suzysnooz, sorry you’re feeling sorry for yourself but you’re absolutely entitled to!! It really is the small things, my 4th & 6th cycles fall in half term & the day before good Friday which means I’ll be ill when my 10 year old is off of school & it really bothers me. I hate the way it takes over your life & manages to chip at the small things.

Best of luck tomorrow. Hope you get to a decision about surgery etc. Big hugs to you all 😘 xxx

[Snoozysuz]

Hi girls, sorry I have not been back to update, been feeling a bit sorry for myself, and trying to get the kids and house organised before I start treatment.  Hope everyone is well.  I start chemo tomorrow, I'm getting 6 cycles of docetaxal and carboplatin.  I had 3 cycles of docetaxel last time and it hit me hard, so not looking forward to 6 of them.  I had bad bone pain last time and lost sensation in my fingers, so might not make work as much as I would like to.  Then after surgery I get a year of Herceptin, yay 3 weekly treks to the hospital for a whole year after!

And who wants chemo on a Friday?  That's wine day!  I was ok about it until I realised my last chemo is the day my daughter comes home from school camp in May, and I won't be able to meet her off the bus.  That set me off with my 1st proper cry after my diagnosis.  It's the small things that do it.

So anyhoo, have appt with surgeon on 15th so have until then to decide about mastectomy.  I've discussed it with my bf who says he's ok with it, but it's me who is stalling.  We have only been together 5 years so nipples still play a big part in our relationship, which is the reason I didn't want to discuss it with my mum, shes gets all flustered .  I just wish I'd been given more info on mastectomies, but I guess I will have time to do some research while I'm off next week, have taken a few days off to see how treatment goes.

How's everyone else doing? I've decided not to cold cap so chose a new wig this week, gone for a nice blonde highlight job, completely different for me, and much cheaper than the real thing would be in the hairdressers

Big hugs to you all

Susan xx

[delly]

I'm okay, thanks Unicorngirl. Hey, I'm an Andrex only girly, hee hee xxxxxx

[Unicorngirlmummy]

I’m having 6 Delly. Sorry, I forgot you didn’t have chemo. Toilet issues are just too much information for someone you’ve not met 😂😂 How are you doing Delly? Xx

[delly]

How are you doing Snoozysuz??
How many cycles do you need Unicorngirl? Glad your feeling pretty ok. Is the constipation part of the chemo? xxxxxx

[Unicorngirlmummy]

Hi Delly, how are you? I just came on here to see how everyone is doing? Suzysnoz, Walker lass?
I had cycle 3 last Thursday. My mouth has been very sore & blimming constipation is as usual an issue! 🙈😩 Other than that, feeling okish!! Made myself go for walks & do a few chores which I think has helped. Certainly takes my mind off of feeling ill for a short while.

Hope everyone is doing ok 😘 xx

[delly]

Unicornmummy - Sooo, where are you up to with everything??

xxxxx

[Unicorngirlmummy]

Ps, I couldn’t think of a username Delly! My 10 year old daughter is unicorn mad so that’s where it came from! Xx

[Unicorngirlmummy]

You’ve been through a lot Delly 😕 It certainly does take a knock at your self confidence. I can’t wear a lot of my clothes until I get my reconstruction. I hope you are pleased with the final result & get you back to dating! I didn’t realise there was so much to it 😬 I’ve been saying to my husband for years I’d like new perky boobs, obviously prior to all of this. They say be careful what you wish for don’t they!!

Hope your oncology appointment goes well today Susan.

Big hugs to you all xx

[delly]

Hi Snoozy, Unicornmummy (is that shades of Despicable Me unicorn?), my old chums Jill, and Ann,

Firstly Snoozy Sue - ref "notifications". For some reason all of mine stopped about 9 months ago now, but got one last week. I keep hearing of other with the same recent prob. I contacted the moderator girls a couple of times soon after mine stopped, thought we'd got it sorted but we hadn't. If you click into the profile section top right of page and click on subscriptions/notifications, you can check what settings you have clicked on or off. But even tho' I discovered one was off, it still didn't solve the prob.

You chemo cuties, I admire your gutsiness, I tell you,. What a hard time you have, treatment effects and hair/eyelash/brow loss. And you Sue, flippin 'eck, two kids as well, more chemo and "needing" to work - crikeybobs. Think you need a SupaDupa booster. I'm really pleased to hear you don't have to have rads this time though. Save you all that time, tooing and frooing. 

So . . chemo first. and your opting for "both" masts with reconstruction options - as to where you choose from for self tissue wise, or implants. Some of that'll depend on what size can be achieved, with what spare tissue you have for both, I', guessing.

NIPPLES, god yeh, utmost importance!! Again, it depends on whether they can be "spared" surgically, during the immediate recon surgery. I had to lose both mine, Hated the thought of, and was why I was so indecisive with my first BC op - lumpectomy but lose almost 1/2 my breast with a 7cm sphere but keep nipple, and rads or lose it all with a mast. If you do have to lose them, there's the option of nipple recon, usually after both your boobs have healed and "settled or draped" (note I didn't say "drooped"!), so that they can level the nipps up properly. I've heard of some women being able to save one nipple and have had it halved to create a second one. The beauty of that being that they both have an immediate natural colour from part of the areola. If you have both new nipple recon, after they've healed, you can have the areolas tattooed, which is really like the icing on the cake!!! And the final option, is to have 3D tattooing, where the nipple is an illusion. There are some interesting posts on some of the fors and againsts on Nipple Recon or tattooing threads. The obvious "for" is that it's one less operation, but you don't have a raised central "nub". With one girl, the tattoo faded very quickly, another was really chuffed with her 3D ones. (Why couldn't you talk nipples with your Mum? she's a woman with her own, and must have seen yours umpteen times in your life, hey. Made me chuckle)

But really, you do need to get all the info on recon options, preferably from the surgeon who's carrying it out. Some surgeons tend to have their "favourite" recon procedure, eg Tummy for softer, or a Lat flap (back) for a smaller but firmer boob, because it contains more muscle. Plus the BCN's there discuss anything further and bash things out with, pro/con and decision wise. Look at loads of photos of results for the various different ones if poss. There's nothing like direct visual info. Also, I wonder if your BCN might be able to put you into direct contact with someone who's had whichever recons done? Don't know. But it's always that much easier to face something when you have all the facts. helps you feel settled in your head.

Unicornmummy - Your another whos' had a tough chemo slog. Gosh I do feel for you both. Awww, and I'm not surprised you felt a bit sorry for yourself. It's great you've both got so much info to give to each other.

Unicornmummy, that's so resourceful of you with the root spray, what a really clever solution. Yeh, I felt great with my pocketed bra and prosthetics on too. But it was my personal confidence that was badly affected - meaning dating, intimacy wise being a NoNo. I wasn't happy looking at myself naked, so I certainly wouldn't be happy with someone else looking at me. Very, very delayed recon. Only ever wanted implants. less scars, risk of infection and healing time. Took me to 2014 to be at a time in my life to go for it. Just due to lots of major life stuff, loss of my parents and brother, a house move to another area, and severe depression. I'm still only at the expander stage, which are now long overdue for replacement to silicones, but I've kept falling off the horse, due to motivation dwindling. I'd be opting for nipple recon and areolar tattooing. But, even just having the expanders installed and all the inflations done, I immediately felt WhooHooo confidence wise, at getting some of my old shape back. What I'd really missed, was the outer curvature of boobs and the extra width it gives to your upper torso again, instead of just a skinny ribcage, with two lateral scars - very neat ones though. And I haven't had to wear a bra since either. 

Sorry this has turned into such a mammoth post girls, but hope it's of some help. There's so much info to all of this. Gather it all in, weigh it all up, keep bashing it out. You may start to feel overloaded, but I hope not.

Sending you both love and strength, and love to everyone else popping in

Dellywellydoodaa xxxxxxxxxxxxxx 

[Unicorngirlmummy]

Delly, am sorry to read you’ve been through a mastectomy twice. Did you have a reconstruction? Xx

[Unicorngirlmummy]

Hi Susan, it’s strange how the different trusts work so differently. I was just told I needed a mastectomy this time. To be honest I just wanted rid of it after cancer coming back. I can’t have reconstruction until later this year due to having rads last April. I’m 42 & I thought I’d be really bothered by it but with the prosthetic boob in the bra, under a jumper you wouldn’t notice. I can only wear a higher neck top as the scar is quite high up for me. It wasn’t a painful op, that numb feeling under the arm again.
The cold cap isn’t pleasant!!! I knew it would be cold & expected the brain freeze but it’s also heavy & makes me feel really lightheaded. That said, I hated the summer last year having such short hair, plus mine came back very curly! I’ve shed some hair but once I’ve faffed with it you wouldn’t notice. It’s the white roots which bother me & not being able to wash it, but I bought some L’Oréal root spray!
I know what you mean about the lashes, some of my bottom ones are missing & it makes me look even more washed out!
Good luck with the oncologist, it’s soul destroying being back in the life of the never ending hospital appointments 😐 I’m on docetaxol & carboplatin this time. It takes a good 10/12 days to start feeling normal again. It really makes my head fuzzy.
Hope you feel better once you’ve a plan in place xx

[Snoozysuz]

Hi Delly thanks for your comment, I am getting chemo 1st, find out tomo what kind and when I start, but surgeon thinks it will be 6 rounds again.  My surgeon is highly recommending a mastectomy after but hasn't given me much info, other than I will get reconstruction at the same time.  He says I can get the left one done 1st, then get the right one done at a later date, but I feel I might as well get them done at same time, wouldn't want the cancer to come back in that one either.

The plastic surgeon who carried out the reduction last time was there, and had a look at my back and stomach and said there was plenty she could use (cheeky) but I don't know what happens about nipples!  I know that might seem petty in the grand scheme of things but I have only been with my bf for 5 years, we have discussed it and he's fine with it but I know I will feel strange about it.  I couldn't discuss this with the surgeon at the time as my mum was there, not the kind of conversation I want with her in the room!!

So I really don't know what to do, I suppose as they gave me a reduction I have already had to adjust to new boobs once, I was just getting used to having perky ones again too.

[Snoozysuz]

Hi Unicorngirlmummy, sorry I haven't replied, I don't seem to get notifications anymore.  Saw my surgeon on Mon, this time it is HER2, whereas last time it was triple neg.  He is recommending a mastectomy, I  have a month to make a decision.  I see the oncologist tomo to see about chemo and when I start.  This time my BCN has suggested the cold cap, how are you getting on with that?  My last oncologist didn't agree with them but she has retired so will see what the new one thinks.  I think I can actually handle losing my hair again, it's my eyelashes, I missed them the last time.

What kind of chemo are you getting?  I didn't suffer from sickness last time, hope it's the same this time.  I've been quite positive up until now, I'm not dying and I can fight it again, but really stressing out about a mastectomy and how I will feel about it after.  They gave me no info on what happens and what my options are.  My BCN is leaving info at the reception desk tomo so might feel better after reading that.  The only positive I can think of so far is that I won't need rads after it, travelling to and from hospital every day for a month was a nightmare last year.

Hope you are doing ok and treatment is not being too hard on you.

Susan x

[delly]

Hi Susan

My experience was primary found R/boob 2006 - options were lumpectomy with rads or mast with full ANC (prior to SNB being introduced). Opted for mast. Then I found another lump L/boob just before my yearly check for the R. Automatically opted for mast and again ANC. No node involvement found in either case, so missed out on rads and chemo with both. But, I have to say, losing my 2nd boob smashed me to bits mentally, and I was single (at 47)! not as you, with kids. Makes a huge difference still having one boob, so is why I'm responding. I hope you don't have to go through the same as you did before, but if you do, that it isn't as bad. Do let us know how you go on results, treatment wise, will yer please.

Fingers crossed for you

Delly xxxxxxx 

[Jill1998]

Sending you hugs , love and strength ladies .Ive had cancer twice in last 2 years (one not BC ) but totally understand your feelings - you are just coming out into the light ,into the non cancer world and you are thrown back into the **** again - very tough on you and your families .Jill xx

[Unicorngirlmummy]

Hi, I replied to your post on a different TNBC thread but I just wanted to reassure you. Sounds like we finished treatments around the same time. Although my recurrence was in the same breast, I’ve had 2 further operation, including a mastectomy. I am on my second cycle on chemo & the oncologist was concerned my bone may would struggle as I’d not long completed chemo. I have 10 days of the filgrastim injections with this round of chemo. I was so sick with last years chemo that I take the akynseo (don’t know how to spell it!) an hour before. The tiredness & side effects don’t seem any worse doing it the second time. As you say, it’s the financial implications too, the fear because it’s back, the anger that life had just got back to normal. I honestly didn’t think my legs would carry me at my oncologist appointment, it doesn’t help that the clinics are always about 1.5hrs behind. I’m trying the cold cap this time. Because it’s a different chemo I’m frustrated that I knew in the last one, after day 5 is gradually start to feel better. On this one the side effects, although milder, they linger for longer. I had cycle 2 last Thursday, I was still feeling awful Wednesday & feeling really sorry for myself but by the afternoon I did start to feel more of a human again. Big hugs to you xx

[ann-m]

Hi Susan,

Sorry to hear you’re going through this again. I have not had your experience, but just wanted to acknowledge your post. There are certainly other ladies who have had a second primary & hopefully will be along to share experiences. 

Sending hugs

ann x

[Snoozysuz]

Last week I was diagnosed with a new cancer in my left breast, in Sept 16 I started treatment for Triple negative cancer in my right breast, and had FEC T chemo, lumpectomy, breast reduction in both breasts and finally radiotherapy and treatment finished in May 17.

I was just finally getting over the tiredness, my hair has come back in nicely and my nails have stopped peeling and now this.  I find out next week exactly what treatment I am getting this time, but wondered if anyone else has had to go through treatment so close together, is chemo worse the 2nd time round?  I wasn't too bad last time, apart from constant infections that put me in hospital, I didn't suffer any sickness etc.  I want to try and work more this time round too as I am still trying to catch up financially.  Just dreading it being worse this time.  I am 43 with 2 kids who still need their mum to run about after them.

Susan