@joodles May I ask if that has included Nab paxitaxel in the list of taxels you have trialled?
Asking as l have an allergy to the carrier used in the other two taxels but not the one used in nab as it’s albumin based. Swapped thanks to intervention from my oncologist arguing down the extra cost on medical need grounds.
Hope your oncologist can help you too when you get to see them.
Goes back to scoffing the small box of luxury high cocoa content Lauden chocolates gifted by my lovely next door neighbour whilst pondering what drugs you had been given to imagine birthing an impossible to breast feed new toe.
@foxgem l too hope the appointment with the surgeon was both useful and will help you to decide what you want todo going forward.
My surgeon has offered to move my surgical appointment by a week which l am grateful for as my DD has a day off and can come with me and my DH as she can translate medical to a level l can cope with.
Managed to make one that is a D to Dd compared to the much bigger E.
DD called and has advised I let the staff on transfussion on Sat know about the two life endangering emergency transfussions l have had previously, the first during a prem cat 1 c/sec under epidural when I redecorated the theatre red and they had to pour blood through me and a planned 37/40 cat 2 under GA when The blood bike runner was on standby outside the main theatre. I signed the consent not expecting to live. shudders No wonder I have hospital based trauma that breast cancer just compounded.
Thank you everyone for such kindness and support I’m so grateful.
It is another tricky situation for me. I dont have enough tummy fat to make 2 new boobs and because its so close to chemo finishing they only want to do 1 boob at a time. 1 being made from tummy fat (diep) and 6 months later the 2nd boob being made from thigh fat (tug). Honestly the thought of this horrifies me. Ive already had 2 operations. Now they want me to have 2 more, spaced 6 months apart. With a total of 6 incisions/scars. 4 to 6 week recovery for each op. Honestly for the sake of 2 boobs that wont look anything like mine its feeling very not worth it. I am being sent back to my original surgeon to discuss implants but if they are really against them then all thats left if fabulously flat.
@felineoptimist I love a brain dump too. It really helps organise my thoughts. There’s always so much to consider isnt there. I feel like for me there’s not really a good answer anymore. Ive completed google now, there’s nothing left to research I just have to make a decision. But we are making decisions and hoping they are the right ones before knowing the outcome because all our bodies are so different. I am completely exhausted by thoughts of boobs. Next year I dont want to say, see or hear the words breasts or boobs haha
@joodles birthed out a toe this has absolutely killed me. The worst part is I completely get where you are coming from although thankfully I can just imagine it I haven’t actually felt pain in my toes yet. My hands and feet are the only things not to feel those contractions. I do feel bad sharing as I dont want to worry others. It is managable really because the worst pains only last maybe 2 days. The rest id say 2 or 3 days are more annoying because of the frequency of the pains. And again not too dissimilar to child birth, once the pain goes it just feels like it never even happened
I’ve been kinda eager to hear how your appointment went, since I’ll be having the reconstruction conversation later in the year. It sounds like you’ve got all the info, but it’s just an awkward situation with something that’s so important.
The amount of effort that a tummy/thigh combo would involve, not to mention risk and pain - I would absolutely agree with your first reaction of ‘not worth it’. I’m not convinced DIEP flap on its own is worth it for myself, I know I couldn’t do two surgeries like that.
Hopefully you can get some implant options, it might be they would have preferred something else but that they could make implants work? Otherwise yeah - fabulously flat and fancy free
100% with you on being exhausted by boobs. I’ve thought more about breasts in the last 7 months than in the 34 years previous combined I’m so done with it.
That is a lot to process regarding so much surgery! I have a similar inability to have DIEP due to insufficient fat so I am not sure what the options will be. I have a post chemo surgery planning meeting soon. I met someone who had had a LD flip round (backbone / shoulder muscle) which looked very neat. Having the removal of both breasts is another level though, and after 2 surgeries already, you are doing so well to face more. The reconstruction decisions just add more trickiness!
I have no pegfilgrastim jab this time as neutrophils were good and last chemo now done hurrah (I hope the future does not hold more for me…) so wondering how bone / muscle pain will be this time. It’s the back spasms for me which got worse after a pretty smooth first infusion.
Tbh I am not looking forward to the surgery (despite having had C sections). Does anyone have any great tips for prep / recovery / purchases - I’ll be having axillary clearance too. In fact I should probably find an inevitable thread about this on here….
@jululemon , l plan on finding a way to quiz the surgeon about what I can do to help me recover after a single masectomy and auxiliary lymph node clearance. Asfor practical items that will be asked of the BCN and possibly my recently retired neighbour who worked asa snr BCN. I want to know how the hell you position yourself to sleep as l am assuming side sleeping might not be recommended. I am doing the BCnow recovery exercises from YouTube on top of arm strengthening exercises so l have a sporting chance of keeping full arm movements.
I dread having the anaesthetic more than the surgery based on previous experiences . will ask if it’s possible to speak with anaesthetics before the actual day as I do not want to risk injuring someone who is only trying to help me. I still favour a flat closure and buying unabra(Uk) and using either a boost (designed by woman for woman so allows air circulation)or knitted knocker in cotton yarn rather than the sweaty heavier silicon solid NHS foob. ( l swear men where behind those) The thought of extra reconstruction surgery after 2 em c/secs, 1 planned c/sec on top of laparoscopy, tubal litigation and emergency gall bladder removal during covid all leaving internal scarring makes me wince. No one is sizing up my leg muscles etc as l want to get back to hill and fell walking. I would not want implants either as l am post menapause and want to get back to art, gardening and walking. Fashion and looking good has never been high up for me. That tends to be decent goretex waterproofs, gardening tools, artists materials and very very good can be waxed walking boots.
Hope all goes well when you see the surgeon and you can make the right choice for you. I am not seeing my allotted surgeon till the 29th June so l am hoping you might be able to share how it goes for you.
@joodles , ouch, as Abraxine tends to be well tolerated. Hope your oncologist can come up with alternatives that help and do not cause reactions for you.
Wow - so many difficult decisions facing so many of you right now.
I think a brain dump is a brilliant way to try to process your own thoughts @felineoptimist and @foxgem. I think there are so many opinions we can canvas and so much research we can undertake but in the end only our own circumstances, gut instincts and a bit of processing time to think about all factors will help. I agree too I’ve never thought about my boobs as much in the entirety of my life as I have over the last months. I still have to have my surgery discussions but so far am not facing anything like these choices I believe so I’m really thinking about you all .
The toe birthing made me laugh @joodles - I love that take on the pain !
Sounds like lots of trauma there for you @wibbles so no wonder surgery feels scary. I don’t have anything like that but my blood pressure always gets very low with any kind of simple surgery so I want to make sure all my history is accounted for - I had a half hour simple surgery and nearly got admitted as my blood pressure plummeted ! I know they know what they’re doing but if we have history we want them to know down we .
Brilliant that you’ve had your last chemo @jululemon. It’s strange isn’t it - we’re so focusing on that but we move immediately in to the next phase. I’ve still got one more to go but already been on the BCN website and looking at post surgery bras, support pillows, seat belt protectors and all the jazz. Maybe I’m just a researcher and organiser but sometimes it feels like it’s the only bit of control you have when you step in to a medical process.
Lots to think about my fellow warriors and so glad this forum is here to help us all process this shit !
Hey all!! I’m just catching up on messages, I wish none of us had to be here but it’s so heart warming seeing a group of people who don’t know each other supporting each other through this strange journey we’re all on!
@foxgem it sounds like a big decision to make, did you say there wasn’t enough tummy fat for both? If only I could send you some of mine!! How come they’re not keen on implants? I’m not sure how it all works! Hope you’re OK
@wibbles they’re absolutely fantastic!!! I tried crocheting last year and I’ve still not picked it up properly I’m still at the stage where I can make a worm
@jululemon well done to you for getting the chemo finish line I know there’s still abit of a journey but what a milestone!! How are you feeling?
I have my last chemo on Tuesday 16th June! I had a fibroadenoma that was found and biopsied as benign when they found the tumor, they asked to see me for an MRI 6 months later to keep an eye on it which I had a couple of weeks ago. I got my letter through yesterday to say the fibroadenoma and cyst had resolved and there was no recurrent disease so I’m taking that as my 1st all clear, feels weird as I’m still mid treatment but I’ll take that as a win I’ve got my radiotherapy starting exactly 3 weeks after the last chemo too, so I should be done with active treatment by 3rd August which is nice to be going too much into the summer holidays having treatment. Then onto hormone therapy and medical menopause (trying not to think about this because prior to diagnosis I wouldn’t even pop a paracetamol unless I was desperate BUT with 2 young children to think about and a hormone positive tyoe that it was I don’t think I’m willing to take any risks). Anyway that’s a thought for another day, I’m going to shut that one away for now haha!!
Hope everybody else is doing well and getting through whatever each day is throwing at you!
Round number 2 of docetaxel was MUCH easier for me on the achey bones and tongue! Xxxx,
@wibbles it seems where i live funding is an issue and it comes down to money and what is availble, bigger hospitals with more budgets pegfilgastrim will be accesslible for
That’s good to hear @katie91 as just coming down from my steroids high from my last one. I think my head is in a better place this time so that’s start
Glad to hear you had an all clear. That does feel like a win doesn’t it xxxx
Weldone on finishing @jululemon i am having my 2nd pac tomorrow I am absolutley dreading this though as it will be the start to get to the end . Any tips on how u have managed it will be much appreciated.
I got pegfilgrastim and wondered the same thing for a while - why others had multiple shots. I’m doing this privately through insurance, and I just got to see the invoices for the pegfilgrastim injection. Each one was over £900!!! More expensive than the chemo drugs!! I’m sure the NHS would get it cheaper than that, but funding would make a lot of sense I’ve got a fascination with how much all of this is costing - eg each set of pre-chemo bloods is £500.
@demimiray oh my well i think that would count me out then. The chemo nurse said that they still have to pay out for the ither injections so she doesnt see the issue with it.
Yeah, I suppose if it’s a course of individual jabs vs the one it can’t be that hugely different. And but a blip in the overall budget. I’m only fascinated by the invoices I see because I only have to pay £100 excess a year total I’d be rather UNhappy paying them.
I’m amazed seeing people start to finish their chemo in this thread though - feels like you’re on the home stretch now. I’ve just finished mine and I started mid-January. The last few weeks were odd though because I felt like I had already finished.
@demimiray i am amazed too because im really going to struggle with the side effects etc . My chemo ward is bad its nhs and not very helpful when it comes to sorting side effects which worries me greatly about tomorrow
I’m so grateful.
I’m so done with it.
I’m still at the stage where I can make a worm 
I know there’s still abit of a journey but what a milestone!! How are you feeling?