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January chemo starters ?

Starfire9
Member

Re: January chemo starters ?

Hope all goes well for tomorrow Aliand,,,,,:: 👍🌼❤️🐟🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️

 

Still weird sensations in hands, arms, feet and mouth. Yesterday I phoned every professional to see if they thought my symptoms were Tamoxifen... since it’s mainly happened since starting the pills three weeks ago. Also I don’t want to go through Rads feeling like this so wanted to no if I could stop during Rads.

Consultant onc said No to both.

Nurses this forum... no idea

Original BCN. No to both and definitely don’t stop the Tamoxifen.

generally all saying that Tamoxifen cannot cause numbness. 

 

Anyway today my new RADS consultant said stop no problem to see if these SE go away! So that’s what I am doing. I just need to know if it’s Tamoxifen or not. I am meeting him on my second week of RADS to discuss.

 

plus I thought I would post the list of side effects enclosed in the Tamoxifen packet. I am getting the ones marked with black line. Note the last one on 1-10 people".......... numbness to the skin.

 

 

love to all ❤️❤️❤️❤️❤️

1B045124-F6C8-4E0F-9076-506356287F85.jpeg

 

 

 

Aliand
Member

Re: January chemo starters ?

Steroids day and already I feel that rush. Not looking forward to the lack of sleep tonight though !!

Rosie howyou hetti gbon post surgery ?

Starfire how are you feeling now ?

Keep swimming the swimmers, keep sunning yourself everyone else xx
Dealdoh
Member

Re: January chemo starters ?

Thanks Aliand, Diep seems to be the way to go although it’s a long way off for me yet but I’ll certainly go along to the FB site you mentioned.  Good luck with your final chemo tomorrow - hope all goes well.  

 

Aliand
Member

Re: January chemo starters ?

I love your photos Jamsey. My unit does t have a bell anymore they got rid of it because they have a lot of people on maintenance chemo. But I’ll be skipping out on Wednesday after my last one.

For me the diep choice came down to it feels more like a normal breast and as I’m only having one done they will match better from a ‘feel’ point of view - not that I go round feeling myself or anything 😂
I didn’t like the idea of it being redone in 10 years or so like you do with an implant although modern implants are lasting much longer than they used to. If I put on or loose weight so does my boob. And I have a friend who has had it done, originally she didn’t want reconstruction but after changing her mind she is delighted with the results.
My op date is July 19th
I found a mastectomy/reconstruction group on fb people are very brave posting pictures ! It’s called Mastectomy and Breast reconstruction UK. It’s a closed group so you have to ask to join.

My nails are dis olourd but otherwise I’ve been lucky with them so far. 2 days to final chemo. I’m eating my lunch in the garden inbetween housework to get the house ready for my feeling crap again.
So nearly there now though.
Dealdoh
Member

Re: January chemo starters ?

Rosie, I think my surgeon does the diep flap reconstruction but I will look forward to hearing how you and Aliand get on.  

Shocked, my arms aren’t too bad although my nails have been destroyed and it’s quite difficult to do things like open ring pulls, press tablets out and even putting on socks.  I also get pins and needles in my toes and feet and have a problem with change of sensation in my thighs, but I am not sure the thigh thing is related to the chemo although it probably hasn’t helped.  Well enough of my whinging - onwards and upwards!

RosieH
Member

Re: January chemo starters ?

Dealdoh I remember you saying now...to go through this once is bad but twice!!!! I am pleased with them although they still have huge dressings on them but the shape seems great. I’m not sure how I will feel about the scars and no nipples yet but I’m trying to stay positive and keep look at clothes that will be better now I don’t need a bra. I’ve had the Braxon, which I think Shocked has too where they put pig skin pockets in and then implants into them. I’m a nightmare patient though and keep catching my drains on stuff while trying to do normal things!!! I think Aliand is going for the flap recon so hopefully in a couple of months you’ll have a good idea from both of us. 

Oh the royal wedding...I’m not a huge royalist although I love the queen and I do like Harry but I was like you Starfire watching Harry’s face just reminded me so much of Diana’s funeral I was blabbing away...although it doesn’t take a lot at the moment.

is anyone who’s finished Chemo and not started the Tamoxifen having period pains...I had some yesterday and then realised that my hot flushes have al OST stopped!! Surely it can’t fire up that quick!!

As for the knicker magnet...I felt it worked fairly well but then read somewhere, Nice guidelines I think that they’re not recommended for us BC ladies....

Shocked I don’t envy your football mad hubby...my husbands Scottish and supports a bloody Scottish Team and an English one!!! What’s that all about xxx

Shocked
Member

Re: January chemo starters ?

Dealdoh I don’t think I’d picked up that you have been through this before - are you getting a bit of neuropathy then in your arms and legs??

 

I tried to watch the reed ding -saw Megan in the car with her mum fell asleep and woke up when they kissed on the steps so I missed the whole thing 🤨.  OH and ds now on there way back from Wembley in a massive sulk as Man U lost so can’t wait. For them to get home.

Dealdoh
Member

Re: January chemo starters ?

Shocked, to add to the alien/syfy theme, I also sometimes walk like one of the puppets from thunderbirds as my feet and legs don’t feel like they belong to me and it looks like i am being worked by strings.  

Rosie, yes I have had a bilateral mastectomy.   I actually had wide local excision and total clearance on the right side 17 years ago and then last year was diagnosed with a new cancer on the right side and a different kind of cancer to the left side with node involvement.  In both cases, I haven’t (to date) had any problems with the clearances.  I am having to wait for reconstruction - if I decide I want it.  You sound as if you are pleased with yours.  I was thinking, if I go ahead, I might ask if I can have smiley faces tattooed on the nipples.  

i watched the wedding and thoroughly enjoyed it. I did indulge in a white wine spritzer, but this morning wished I hadn’t!  

 

Starfire9
Member

Re: January chemo starters ?

Hello,

 

Still not right.

Rosie:

I cried throughout the wedding and thought about Diana.

Not a drop of fizz for me as I tried it last week and was completely floored with memory loss after three glasses of white. i think it was the Tamoxifen/

Shocked, My daughter says my head is so shiny it's like a mirror The truth comes out of a five year old x! im using the red dot from Lush in hope and have ordered some Jamacian dark caster oil for rubbing in.

Shi.... which Debenhams... is it Derby? xxx

 

RosieH
Member

Re: January chemo starters ?

Hi ladies...

woohoo Jamesy you’ve made it! So happy for you.

Aliand so close now...and Amy, do you have any more?

Starfire hope you’re feeling a bit better lovely...

Shocked I hope you’re feeling better soon xxx

My boobs are doing well and they look like they’re going to look good...thankfully 

Dealdoh...what was your surgery? Did you have have a bilateral mastectomy as well? Are you having any problems after the clearance?

Finally did anyone watch the wedding...a couple of hours of escapism xxx

Shocked
Member

Re: January chemo starters ?

Dealdoh chemo hasn’t taken your sense of humour. Think I have the same look as you right now without the regrowth  - alienesque I’ll go with that rather than looking ill though not sure looking like I’m from a different planet is much better, one things for certain I don’t feel very feminine.

 

I had a small glass of champagne last night but it tasted awful - that better change and quickly meant my OH had the rest of the bottle which just isn’t fair 😡😡

 

jamesy typical the one thing that is a bonus in chemo not shaving / waxing is the very first thing you get back 🤨🤨

Shi
Community Champion
Community Champion

Re: January chemo starters ?

😘😘😘ladies as soon as your lashes start to sprout you need to train them ASAP with mascara again. Ask at the beauty counters for some of their little wands they use when people want to try mascara, they are Smaller brushes and will help while lashes are short. 👏👏👏👏on the pit shave, it’ll Be legs next 😁😁😁buzzz buzzzzz I’m not sure if every Debenhams is doing a lgfb evening on 7 June 4pm - 8.30pm but the one near me is and it’s £5, you go into a raffle too and I think it’s 30% off any products and I think you can use the £5 that you paid as a voucher against products too, I think that’s right. Just thought I’d mention it if any of you wanted a bit of a pamper 😘😘😘💕💕💕Shi xx
Dealdoh
Member

Re: January chemo starters ?

Great pictures Jamesey - that’s a handful and a half of grandchildren you have there and they all look lovely.

Thanks Amyjb and Shocked and I am glad you have reached the shore Shocked.  I am getting there but doing a very slow doggy paddle.

I don’t think I look ill so much as alienesque with the bald hair (some regrowth of very fine white hair with patches of dark), about six eyelashes and almost no eyebrows. I think the look kind of suits me and I’m thinking of keeping it (NOT).

Start my rads on 29th and start the arimidex on the same day.  Unfortunately I am stuck with my port for the next two years as I am on Zometa and have had bilateral axillary clearance.  

Jamesy46
Member

Re: January chemo starters ?

Just had to shave my armpits !! First time since last October !!! ❤️
Shocked
Member

Re: January chemo starters ?

Glad the SE are being kind Amy and lets hope the final sneaky one is an easier round xx 

 

I am ashore at last and cheering you, Jamesy and Aliand aong until you reach us .

 

Dealdoh - really hope you are starting to feel a little better and you eventually feel up to a little celebration - apart from a complete lack of energy I think what I am struggling a little with now is the looking ill part -  when I look in the mirror I look broken if you know what I mean.

 

My OH and son have gone to the FA cup final today - (gorgeous day for it) - still managed a daft row with my OH in the 10 minutes I saw him this morning  Smiley Frustrated

 

Got my final Oncology appointment on Wednesday - OMG how weird does that feel to say!

 

amyjb
Member

Re: January chemo starters ?

Great pics Jamesy!  I've got 2 wigs and much prefer my short one.  And I've also put weight on due to no exercise and eating more to mask the taste in my mouth - so looking forward to getting back to normal!! 

Starfire, I'm sorry you're still getting 💩 from your treatment.  I hope they find out what's going on  to set your mind at rest, you deserve a break!

Hi Dealdoh, I hope you're feeling a bit better today?  ☺

Well I am on day 5 of Abraxane and I'm yet to experience any decent side effects!  I'm hoping they're not delayed and this is it, if so I can easily do 1 more!

 

Paloma
Member

Re: January chemo starters ?

Lovely pictures Jamesy xx

Jamesy46
Member

Re: January chemo starters ?

Thanks guys , the last baby was born just after midnight Xmas night , she stayed home and watched call the midwife a and then went in xx that’s what happens when we had four daughters ! I tho k that’s it xx just wish their grandad was here to see them all , he only knew three of them but I know he’s looking down on us xxx
I’m off to Mexico for Xmas this year but all my children and grand kids are moving into my house Xmas eve and spending Xmas at mine ! As long as they tidy up before I come home xxx
Shocked
Member

Re: January chemo starters ?

Jamesy loving the wigs - that’s photo of you and your grandkids is beautiful - bet Christmas is fun at your house. I’ve put in a daft amount of weight from not getting off my backside enough since diagnosis so will be commencing attack of the fat shortly.

Starfire it’s not fair that you are still suffering- you’ve had more than your fair share of sh@t from the chemo.

Shi
Community Champion
Community Champion

Re: January chemo starters ?

Jamsey 😁😁😁😁loving the wig collection beautiful 👍👍👍all look amazing. Aliand do you have a shop near you that does wigs and hair extensions and things? You can get it in there if not good old amazon. I massage it in for 5 mind then leave on bonce while I pretend I’m a chip covered in oil then after an hour wash it out with lush new shampoo red dot thing we’ve all got 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Starfire, havecyiu ring the BCCF helpline for some more reassurance darling, they are brilliant and could hopefully answer your questions and help you 😘😘😘💕💕💕Shi xx
Jamesy46
Member

Re: January chemo starters ?

Sorry for the massive pics lol xxx the top one is me at Xmas with my seven grandchildren xxxx and my long wig lol xx
Jamesy46
Member

Re: January chemo starters ?

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Jamesy46
Member

Re: January chemo starters ?

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Jamesy46
Member

Re: January chemo starters ?

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Jamesy46
Member

Re: January chemo starters ?

Starfire at least they are taking you serious and giving g you all the tests to make sure you are ok xxx
Aliand I was so emosh yesterday , yay no more chemo but knowing I have the next six or seven days feeling like hug by truck again , took my last steroids ever earlier and start my last five injections tonight !!! I will upload a pic when I’m my iPad later xx I also had a short wig delivered today ( 5 ) now lol but thought it’s a good interim between wig and my pixie hair when I go back to work xx
Got my rads planning on the 30 May and my Hickman line out on 5 June xx need to lose the 2 stone I have put on by basically sitting on my arse for the last six months but I know I can do that xxx things are looking up up up and I’m ready to swim to the shore xx
🐠🐠🐠🐠
Aliand
Member

Re: January chemo starters ?

Oh starfire your journey is never simple is it. They say that you only get what you can handle - well if there’s any truth in that you are the strongest most amazing of all of us and the s*** keeps flying your way to scare the hell out of you !

Hoping that this is just another blip and you are soon returned to feeling calm(er) about it all. How fantastic you felt well enough to paint the fence though I’m delighted about that.

Ship where do you get Jamaican black oil from ? Does it colour your scalp/hair ? Or make you greasy ?

Jamsey yay 🎉

My last chemo Wednesday and I’m starting to dread it again knowing that the crapness is on it’s way
I had a bad weekend d last weekend seems to be the case before your last one does t it. The tears wouldn’t stop. But I’m over it now.

Had s day out with Dh Family on Wednesday and I’ve been knackered since. And my legs have been aching. It’s my good week so I suppose I’m just not aware how much all this is taking out of me.

I want my picc out asap but my bc nurse said they won’t take it out for a couple of weeks. I’m hoping I can persuade them otherwise. Why wait. If I get ill they can just canulate me like they would anyone who doesn’t have a picc.
Still not got my taste back properly. Most things still taste strange.

Starfire9
Member

Re: January chemo starters ?

Hi Shi, no i have only had my rads planning so far x

Shi
Community Champion
Community Champion

Re: January chemo starters ?

Star fire ❤️❤️❤️Have you done rads yet? Rads made my hands/arms go into numb spasms. The chemo can also affect nerves I think. You can phone the BCCF helpline darling they could give you more information and advise and help sooth your nerves. Being on high alert with everything is natural my lovely, us oct thread all had 😳😳😳over the last few weeks as the rads gave us bumps in areas and we’ve nearly all been back for ultrasound and check up to be safe. You are doing right thing getting checked out 😘😘😘 ladies try rubbing in Jamaican black castor oil into bonces too, it’s helped along with the new bar from lush 💕💕💕Shi xx
Starfire9
Member

Re: January chemo starters ?

Hi ladies,

 

Long time no see. It looks like most are near the finish line or just there. well done fel and Jamesey. well done Rosie for the surgery. not long now Aliand and Amy.

 

I've been in hospital and would like to off load. On Monday I had a really good day and did some painting of garden fences with my left arm. I said to my husband I may have done too much. On Monday night I awoke with a numb left arm and numbness down my left side and face. I thought it was a stroke. It lasted for about 30 minutes until all feeling came back. Next day I phoned rapid response and went in to the specialist cancer ward. Had all the basic reflex tests which were okay and then they suggested a CT scan. Oh my I went into panic mode. I had one with and without the contrast dye and it thankfully came back all clear. Next morning my consultant came to see me and couldnt believe why I was there as i have finished my last chemo 5 weeks ago. i told him what had happened and he sent me home but I have to have an MRI. I asked him if it was the tamoxifen as I have been taking it for over two weeks and he said NO WAY. THIS HAS SENT ME NEARLY OVER THE EDGE

 

I dont know what to make of all this but I am frightened. I have been like an emotional wreck since starting the tamoxifen but everyone has said it should calm down after taking it for a couple of weeks.

 

In the next bed was a senior breast care nurse who was DX three weeks ago and was neutropenic. She says that Tamoxifen can cause numbness in patients although its not that common. Obviously I was stopped early due to Neuropathy also and this can take time to settle. She also commented on my baldness, lack of eyebrows and lashes and says that your hair will start to grow back only when your body starts to recover from the chemo. everyone is different. She says that the consultant will be giving me an MRI to be sure.

 

ALSO I still have thrush down below and now in the mouth.... late effects of chemo or Tamoxifen? 

 

Any thoughts WELCOME

 

Lots of love xxxx

 

 

Jamesy46
Member

Re: January chemo starters ?

Amy I have my herceptin and ptremazub ( not spelt right lol ) injected I’m my leg , a bit stingy but ok , I finish that next April , got my rads planning 30 May xx
My Hickman line is booked to come out 5 June xx just hope the stitches are out for my holiday xx pushing it time wise but can’t hold up the rads any longer xx
Dealdoh
Member

Re: January chemo starters ?

Congrats Jamesy and have a great holiday.

Shocked, I know how you feel.  I’m 3 weeks post final chemo (doxetaxol) and found this final cycle took longer to recover from.  The first week was pretty much spent in bed, neither eating nor drinking; the second week, I would do a bit but then have to rest but was still not eating.  Thankfully the eating and drinking has now improved, which has increased the energy levels but it’s really only the last couple of days that I have actually managed to keep going for most of the day.

I must confess because I have felt rough, there hasn’t really been much of a sense of celebration.  I do feel somewhat ungrateful that I am not more upbeat but although the chemo is done and I am not going to have to face more cycles, there is still the aftermath to deal with.  Sorry for downer 😢

amyjb
Member

Re: January chemo starters ?

Awesome, congratulations Jamesy!!!  Are you having all your Herceptin through your picc line?  I'll have to keep mine in as well as I'll be carrying on with Pertuzumab (& Herceptin) which is an IV infusion, possibly indefinitely if the PET scan I'm having in July shows disease still in my lymph nodes.  I really want it gone as it just adds to the "cancer patient" look but I suppose I should be more worried my long term health. 🤔

A friend of mine sent me Victoria Derbyshire's book "Dear Cancer, Love Victoria ", it's interesting reading about someone going through this very same thing, although I've not got to her chemo part yet.  I'll bring it with me when we meet up if anyone is interested in reading it? I'm an avid reader but not a keeper of books, I usually get mine from the library.

 

🐟🏊‍♀️🏊‍♀️🐠

 

Shocked
Member

Re: January chemo starters ?

Yay Jamesy - was there actually a bell on your unit then to ring - well done on crossing the line xxx

Jamesy46
Member

Re: January chemo starters ?

I’ve just rung the bell ! Got so emotional ! Then they said see you next week lol , oh yes line flush and another 16 herceptin to do , such such a great feeling still yippee !!!
Paloma
Member

Re: January chemo starters ?

Fel, I have very little still also. They are very fine and light and you can only see them up close. Hope yours start to come through very soon x
Shocked
Member

Re: January chemo starters ?

Fel - hoping your hair starts to come through soon - I'm still very bald apart from little white spiky bits that aren't growing but then I'm only on day 10 after the final FEC. Guessing its gonna take a little longer for us FEC ladies who didn't cold cap. Being bald helps with the flushes at the moment anyway 🙂
Shocked
Member

Re: January chemo starters ?

I'll take 5 a day Rosie its about 5 an hour at the moment!! You had one of the magnets didn't you - did it work for you?

 

 

Hope CT is just too busy enjoying life without chemo.

 

Should be packing up the kitchen instead I'm slobbing on the sofa - can't shake the tiredness no matter how much I try, think I may have to ask for help from the family (though that will stress me out)- I really want to celebrate finishing as well but even that seems too much effort, Feeling guilty as I should be feeling positive but to be honest just feel shattered,

 

 

RosieH
Member

Re: January chemo starters ?

Hi Shocked...my flushes calmed a bit once the chemo was out my system I’m averaging about 5 a day.

Jamesy that sounds amazing!!! I can’t wait to go away somewhere!! Have an amazing time 

I’m worried about CT she hasn’t posted for ages xxx

Fel70
Member

Re: January chemo starters ?

Have a great holiday Jamesy.  

Shocked and Paloma have a look at the Hot Flushes posts a lot of people are talking about Lady magnets which they say help.  I was well past my menopause and hot flushes but now I am taking Letrozole I have started getting the odd one now and again.

Still no hair coming through yet it's been 5 weeks since my last FEC so hope I start to see some new shoots soon.

Jamesy46
Member

Re: January chemo starters ?

Yes shocked I’m just going to turn up , they will only have 3 days left if theirs , will be fab I hope x
Shocked
Member

Re: January chemo starters ?

Jamesy woohooo a holiday very soon to look forward to - are you still planning on surprising your kids? Got an insurance quote earlier this week for our US trip and it was over £500 i've had a few in that price raanfe now so its not going to be cheap with all the bits and pieces I have falling off me 😄

 

Paloma - I've got the windows wide open and an electric fan on blowing directly at me every night now, the flushes only really started badly for me in the last couple of cycles but they certainly aren't any fun at all I literally cannot cope with my wig or any head covering when they hit.

Paloma
Member

Re: January chemo starters ?

Jamesy that's fab, hope you have a great time 😀Insurance is good!
Shocked, the flushes are a right pain aren't they? I use an old fashioned handheld fan at night (a Spanish ladies one not battery). It helps slightly
Jamesy46
Member

Re: January chemo starters ?

This cancer lark costs money I’ve just booked a cheeky week away after chemo between rads . Got insurance for Majorca 14 quid !! Told them everything so well pleased all inclusive and my kids are already there I’m going to surprise them will stock up in factor 50 but I’m excited xxx
Shocked
Member

Re: January chemo starters ?

Still not quite onto dry land but definitely should be there soon - just had a major tantrum and shouted at my other half how he doesn’t understand so now sulking in the back bedroom . Wonder if my hormonal outbursts will subside at some point or just get worse with the hormone treatment  😖😖😖😖😖😤😤😤😤😤

 

Has as anyone got a miracle cure for the flushes they are so bad now - I’ve ordered a chillow but don’t hold out much hope 😡😡😡

 

 

 

 

 

Shi
Community Champion
Community Champion

Re: January chemo starters ?

Rosie❤️❤️❤️❤️👍👍👍👍well done lovely, rest up and don’t forget to name your adopted children so you bond 😘😘😘paloma, you need to get fluconzole tablets for that my darling, I got thrush moth every round 😳😳😳it’ll get rid of it and keep you safe as shocked said 👍👍👍immune system ❤️❤️❤️Amy 🚤🚤🚤🚤speed boats on its way then you and Aliand can enjoy the raft with all the trimmings for a little while before you leap to the Sunbed’s on the beach we are cheering you from the beach and can see you, hope you can hear us cheering you both on 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻👍👍👍👍👍😁😁😁💕💕Shi xx
Fel70
Member

Re: January chemo starters ?

Well done Rosie, so pleased it went ok.

Amy what a mean trick throwing in an extra chemo.

Shocked
Member

Re: January chemo starters ?

Flipping heck Rosie how big have you gone if you are using them to float 😄 😄 😄

RosieH
Member

Re: January chemo starters ?

Hi ladies still in hospital having IV antibiotics till tomorrow but all is good with the boobs...physio came in today and said they’re like two adopted children....the first few weeks are the most delicate and I have toolook after them so we bond!!! Loved the analogy....

Amy I. So sorry they’ve hit you with another session I’d definitely have cried. You are so close now lovely. Aliand when’s your last one it most be next week or so. 

Shocked im going to float out on my new boobs and pull you to shore...

Jamsey so pleased it’s your big finish this week...it will feel increadible next week when you come out that fog for the last time...we are all so close now ladies...so close to joining the real world again xxx

Shocked
Member

Re: January chemo starters ?

Amy oh my goodness you did well not to cry when they told you about the extra dose keep swimming June will be here before you know it and hopefully the SE will be kind 🐠🐠🐠

 

Paloma I’d get some meds for the thrush and  get rid as soon as possible especially since your immune system will be at its lowest next week - for some reason I have 14 bottles of oral thrush treatment from the hospital from when I was admitted even though I’ve not even had it - touch wood. 

amyjb
Member

Re: January chemo starters ?

Hi all,

Aliand, I thought yesterday was going to be my last but was told that my onc had prescribed another dose on the 4th of June so I'm going to be having more cycles than originally planned - almost as many as you!  I'm a bit disappointed as I went in yesterday thinking that was going to be it, you can imagine how I felt when told there was going to be another one.  I didn't cry tho, maybe because I was on the chemo unit and not at home.  I've been changed to Abraxane so I'm praying it's not too harsh if I have to do 2 🤞

I feel like I was dropped in the middle of the bloomin' Atlantic and I'll never see land again 🏊‍♀️

Paloma, it would probably clear up on it's own eventually but I found it soo gross I got treatment both times (and have more in the cupboard in case I get it again) and it cleared up in a couple of days.