At around 18 minutes in the video he says symmetry is funded. Sounds like they are being awkward and saying no. The decision you made in the throws of your diagnosis isn’t the same now. How you feel about the way you look isn’t the same. I read on hear many ladies going back months later to have reconstruction, even @jeml said she may not want to stay flat and may change her mind, so assume her team are aware of this.
If it was me, I’d call and speak to the BCN nurses and chat it through. If they say what you want is possible then push back at your team. It’s your mental health aswell living like this if you’re not happy.
Yes @arty1 you have a right to be treated where you want (had to move daughters treatment once) stand your ground and ask for 2nd opinion at a different hospital. That will also show them how important this is to you.
So its only Tuesday and already had a fail yesterday trying to get a new bra fited with a charity. I’d emailed ahead about weird sizing but after 3 try ons of rubbish fits gave up and they ordered some. So I’ll have to drive the half hour and pay for parking again. But at last my lovely friend has just done my crumbling nails with BEEAB strengthener. I don’t normally do polish but this has cheered me up no end (and not having to worry about catching the split half way down my left big toe nail) no splits flakes or jaggy edges to be seen.
I’ve lost a pinky toenail and my others are cracked across the middle so I assume they will fall off soon.
I hate feet, toes and toenails so not remotely bothered.
My hair is now starting to resemble Margaret Thatcher’s (I am not happy ). Specifically this style , it doesn’t flatter.
No nosebleeds this cycle, so can’t do my Stranger Things Eleven impression this week.
Had my first mammogram since surgery this morning, thank you @arty1 and @kartoffel, you were right, it was just scanxiety (whoever came up with that, bloody genius ).
Not saying it was pleasant or anything but not nearly as painful as I’d expected, though she was a bit rougher than I anticipated (and the other sonographers/mammograists, or whatever they’re called, at the other hospital I had my previous ones at).
Now just meeting with my manager tomorrow to work out my phasing back to work, CT scan on Thursday and internal () ultrasound (for my annoying cyst) next week and then we’re back to hopefully what will be a usual schedule.
Yes i opted to stay flat but they told me i can get reconstructed later on if i decided to
Hey ladies! I not been on here at all, found my self struggling to click on… even though you are all a lovely bunch and very helpful… for some reason i just wanted to switch off for a bit. Anyone else ever had those moments? Had a lot going off this past month and i have felt exhausted i think its catching up to me oh and then theres the perimenopause yay. Hope everyone is okay! X
Hi all…it’s been a while since I last posted as I have been struggling over the last few weeks. Had a couple of trips to A&E, one admission and one attempted admission but I discharged myself after 8.5 hours sitting in a packed emergency department. It was like a bloody war zone. EC was brutal, both physically and mentally, but glad to say that I’ve survived and I’m now on weekly Paclitaxel, which I’m told is the easier of the two. I had my 3rd infusion yesterday and so far so good in comparison to EC. I’m also having Phesgo injections every 3 weeks. Has anyone else had weekly Paclitaxel? I’m really worried about developing neuropathy… I’ve been told by one of the nurses that it’s less common in patients receiving weekly treatment as the dose is smaller, but would love to hear about your experiences. I have been using the cold gloves and socks but find that they don’t retain their coldness for long enough. I was supposed to use a cooling device that my hospital is trialling yesterday, but despite confirming the day before that it would be available for my appointment, it wasn’t! I was so upset because I didn’t take my cold gloves/ socks, so I’m now panicking. How long does it take to get symptoms? Is it immediate?
I’m attending the CIC event on Saturday and very excited to meet some of you lovely ladies. This forum has been such a blessing… thank you ladies!
Thanks for confirming @jeml , sometimes I think I’ve read something then I have to think again and even try and find it. Hope @arty1 can use this information to push for what she wants and needs.
I get it about switching off, being a community champion I sometimes feel I have to be on and can’t switch off. Then I remember it’s voluntary and with the addition of many new champions including 3 others on this thread, I can leave the forum in safe hands. I have try to have a couple of days off a week and if I’m away I try to not look. Sometimes I think it does us good to not have to think about cancer. We all have to do what is right for us.
Lovely guinea pigs, bet your daughter is made up.
@maria1970 sorry you’ve had such a rotten time, still can’t believe those on chemo are left in crowded and unsavoury A&E for hours. I have weekly Paclitaxel and used ice packs /slippers at home afterwards and the following day. Some centres offer ice therapy to help prevent neuropathy but I think it’s still being trialled to access how good it is. My cancer centre was 30 miles away so couldn’t take ice packs with me. Some people have recommended SuziPads from Amazon but I just bought ice packs and some ice slippers. I had some neuropathy but it was on and off and had some reduced / corrected doses. Occasionally I still get stinging or pain in my big toes and it’s been 18 months since I finished.
@jayveebee your nails looks fab and my favourite color is the orange one. @sez I can’t understand how some nurses are being rough with ppl going through cancer treatments, one of the nurses gave me the phesgo injection was not even polite to say plz or thank you, she was treating me like dog saying (SIT) and even couldn’t walk properly next day because of the way she inject me.
But most of them other ward nurses were nicer.
You made me laugh with MT pictures, my head looks like kiwi now lol. @jeml it’s normal to switch off and keep quite, @jeml@gromit12 the pigs are so cute, I wanted now to get some now will add it to my crazy shopping list through this treatment . @maria1970 sorry to hear about your visits to A&E and well done finishing EC, and for neuropathy I had some on my fingers because of docetaxol and I used to wear compression socks and gloves as I can’t stand cold.
@naughty_boob all you community champions sre brilliant and its really not expected that you are checking the thread daily! Thanks for what you do. @maria1970 yes I’ve just completed weekly Paclitaxel, I did get some neuropathy but only from about week 8 and mainly left hand. I didn’t use cold mitts as I couldn’t see how to keep them cold or navigate round a cannula! I wore my compression stockings. Im hoping now I’m done with pax that neuropathy will reduce. It comes and goes anyway and I think is better when I’m more active. I got steadily more tired but yesterday I had my best day in ages and my brain felt much more engaged so here’s hoping it proves ok for you. I think we all work really hard to do what’s best so frustrating when we can’t access things!
I think the nurse was just rough compared to the others, I just felt a little manhandled. She did the whole process a lot quicker than other mammograms I’ve had so I think that’s just her way of getting it done quickly.
She was very nice throughout I just didn’t expect her to be moving me about so much, but she probably had to to get it done swiftly.
My first phesgo was done incorrectly I suspect, she was telling about how it needed to be done high on the outside of the thigh and then proceeded to do it more on the front and closer to my knee.
I’ve subsequently now got nerve damage in that thigh, every other phesgo was higher up and on the side. I know the first one was wrong because I was left with a massive mark on my thigh for over a month and that didn’t happen with any other injections afterwards.
I had to have a nerve conduction studies test because of it which was literally like torture, I felt like screaming and crying it was so painful (and the results were inconclusive so it was a waste of time).
So glad I don’t have to have phesgo anymore, think it gave me PTSD cos I don’t like people touching my legs anymore, makes me flinch.
Hi all, i’m just catching up with lots of posts while sitting in the sun overlooking Polzeath beach, cornwall. Not so hot here as some places, just lovely. My hair is doing strange things in the salty, sandy air, sticking up on end or gping in random directions, i think i will get it cut and keep short for a while. @maria1970 i had weekly paclitaxol and some peripheral neuropathy, i had my dose reduced twice for that and other side effects, but still left with a little altered sensation nearly a year since stopping treatment, but i dont notice it much. Bowels have settled down since finishing phesgo thank goodness, although spicy food still a danger ! @hasnae the phesgo injections depend very much on the nurses administering it. Most of my oncology nursrs wete wonderful and took their time to do it slowly, if we wete chatting it was fine after the initial sting. Glad to get to the end of them though, no more trips to oncology treatment room.
Even though i met some people in the moving forward course they seemed to hsve different experiences and treatment regime so i still find this forum a source of comfort. I’m sorry i won’t be able to mske the event on saturday would have loved to have met some of you in person for a fun day.
I was in an all day First Aid course yesterday so I now feel qualified to instruct you all to run your hands under the cold tap for 20 minutes if you scald them on the oven, amongst other things. It was a great course because the instructor actually got you to role play everything which I just loved. (Although I realised I needed to tone it down a bit after my defibrillator scene when he mentioned that it was clear to see who was the drama teacher! I think I thought I was on Holby City.)
@arty1 Congrats on completing on your new home. I hope it’s your forever home and you never have to move again. I’m so sorry to hear about your daughter. That’s a new added worry that you don’t need. I pray they can get to the bottom of whatever is causing a severely enlarged liver quickly. As for your boobs situation, @naughty_boob provides the facts as brilliantly as ever, so push for an appointment. I am sure I would feel the same as you in your situation. For me, the implant on the side I had my mastectomy has worked really well. I’m more than happy to DM you a pic if it helps to see what can be achieved. At least you would know you were on a waiting list even if it takes a time to get the op. Go on, make that call.
@jayveebee I am also loving that hot pink and tangerine nail combo. I may have to pinch it.
@sez Yes, my hair has also been through the Margaret Thatcher phase. When I went to the hairdresser she tried to blow dry it to make it look half decent and that pic is exactly what I ended up looking like. That was the day I returned home and my husband and his friend both started laughing and asked me if I was going upstairs to put on my navy twinset and pearls! Best of luck with the phasing back to work. I never thought I’d be so happy to return to the office. In the words of Joni Mitchell ‘you don’t know what you’ve got till it’s gone’!
@jeml I am quite sure everyone on here understands that sometimes you need to take a step away from bc. I do it at weekends. However, I’m glad you did come back on here to introduce us to the new piggies. @gromit12 I love Bubble and Squeak too. Guinea pigs should possibly be prescribed at the same time as Herceptin. They are bloody gorgeous.
Hi @maria1970 - You attacked EC head on like a Trojan and we had no idea you’d been having such a rough time. It’s horrible, it’s poison but you’ve done it. 8.5 hours in A&E is horrendous. I had 12 x weekly Paclitaxel and I found it much easier than EC. I get a slight tingling in the tips of my finger tips sometimes but that’s it as far as neuropathy is concerned. I am really looking forward to meeting you properly at the CIC event on Saturday.
@pennyp - Have a lovely break in Cornwall. Maybe there will be other events when we can meet up. Hope so.
@naughty_boob - thank you … that’s a really helpful video x I called and left a message for the breast nurses yesterday and was called back and told . I’ve been discharged , they can only help with issues on my op site and if I want a reconstruction I need to go to my gp and ask for a referal to the breast surgeon to go on the waiting list . She said it’s a long wait though just for the initial appointment (disappointing ) and with me moving in a year that’s going to be awkward…
@salbert - Thank you re the house x it’s not a forever home but who knows what’s round the corner … unfortunately we can’t move for a year My surgeon refused me even an implant at the time of my mastectomy … she said it wouldn’t heal as I’d only given up smoking two weeks previously
@jeml - when I asked my surgeon if I could have a delayed reconstruction she said no . It would t be possible … I was basically given no options … it was disappointing … I think if they’d taken both I’d have been happier . At least I’d have been even
Remember checking in here isnt obligatory … we are all here to support each other but sometimes just typing and posting can feel exhausting…
@jayveebee Ooh I do like those nails … so lovely and summery !!!
@sez I’m so glad the follow up mammogram went well … I must admit some of the radiographers seem to manhandle you to bits
@hasnae87 please don’t be afraid to advocate for yourself with the injections … it should take a MINIMUM of five mins and ideally six to eight … I used to insist they did it over the longer time until I swapped to infusions
Tell them you’ve had a bad experience with the phesgo, I did before every other injection after the first horrible one and the nurses were all extra gentle cos I think it made them not want to be like the first nurse (my chemo brain made me forget her face so I don’t know if I had her more than once, might have slagged her off to her face , if I did she never said anything).
Hopefully the same will happen for you and they’ll treat you with extra kindness.
They’re not nice those injections, I was happy to stay on them prior to learning I needed kadcyla but now I’m not I’m happy to get my meds through my port instead of potentially damaging any more thigh nerves.
Met with my manager and I return to work next Friday, thrn doing phased shifts of two days a week and see how I go. Quite excited to see everyone, we have a work whatsapp group and I get half stories and anecdotes and miss context. Be nice to have a natter and be in on the jokes again.
@arty1 that’s so disappointing. Might be still worth a chat to the GP. I know when you move to Wales you will be under a different health board but there should be a continuity of care. Maybe if you get referred in England it can be transferred Wales, although I believe the Welsh waiting lists are quite long.
In South Wales, only Swansea Morriston hospital seems to do reconstruction/ plastic surgery, in the North it may only be one hospital and sometimes I’ve heard people having to go to England as it’s not available in North Wales (for many things not just BC)
A quick google to see if I could find anything:
AI Overview
In North Wales, NHS plastic surgery services are primarily provided by units in North West England. The Welsh Centre for Burns and Plastic Surgery, located at Morriston Hospital in Swansea, serves as the primary center for burns and plastic surgery in Wales, including patients from South and Mid-Wales, as well as severely injured patients across the network
So if you’re referred in England you may still have the reconstruction in England.
Ive just finished weekly Pac, well actually oncologist cancled rest of cycles last week because of SE, ive done 5/9, no neuropthy but I got a recation of rash on hands which spread up arm. So Im done with chemo, wahoo, rang the bell (see post on March group) x
). Specifically this style 
, it doesn’t flatter.
) ultrasound (for my annoying cyst) next week and then we’re back to hopefully what will be a usual schedule.
oh and then theres the perimenopause yay. Hope everyone is okay! X
my therapy pigs.x
.
Best of luck with the phasing back to work. I never thought I’d be so happy to return to the office. In the words of Joni Mitchell ‘you don’t know what you’ve got till it’s gone’!
My surgeon refused me even an implant at the time of my mastectomy … she said it wouldn’t heal as I’d only given up smoking two weeks previously