One great tip I heard from Dr Liz O’Riordan is to cut off arms of a long sleeved top or the feet of knee high socks to wear on your arms as it can get cold. Also ask for blanket for your lower half. It really helped me.
@kartoffel sorry to hear you are feeling a bit low with your impending surgery. I’m sure you have got to some sort of ‘new normal’ and now this will put that back. I suppose to think of the reasons why you are having this proved and how it will make you feel afterwards make help change your mindset.
Sorry to hear about your friend, I’m sure this will affect the way you feel about everything. I hope her treatment plan is in place and wish her well.
I admitted out loud the other day about thinking about ‘when my cancer will come back’ not ‘if’. I feel better for saying it rather than suppressing it.
@boobitis I can only imagine what it has been like going through all of this with a 9 year old, my children were in their 20s.i had a double lumpectomy so can’t comment on your procedure but so pleased so many others have been there to support you.
Good luck with radiotherapy @hoggie. That Flamigel is excellent stuff so that would have been my recommendation if you weren’t already kitted out with it. Here’s hoping you sail through. A Whole New World does indeed seem apt. I got the Mamma Mia soundtrack played for me as I was off to Mamma Mia The Party at the end of radiotherapy. That was a year ago now which seems incredible. It will be over before you know it.
Our dear @kartoffel, I’m not surprised you feel a bit melancholy. We have said many a time how the HER2 journey is a long one, but yours has been longer than most, even by our standards. To think of going through all of this and then hear that a friend has already had a recurrence, is sobering. It’s the thing we all dread. It really, really sucks. How are you doing today? I think your home city is awesome, by the way.
@boobitis you will get through it. I think we all worry about the effect this will have on our kids if we have them, but we somehow all manage by taking it one day at a time. Is your support network a good one? Take all the help you can get and you will find your way of explaining that mummy has to have all these operations and treatment to get better again. I worried about my son and told his school. His Head of Year came to see him and he told me off for making too much fuss! He said “I really am fine, Mum!” He was. I’m sure you will find your way of ensuring your son is too.
@carrie5 I have decided that in addition to my 2 jobs, I will take on the church fundraising drama evening this month and singing for the 9 Lessons and Carols service next month. I really must learn to say no! Once Christmas is out the way, I will get on with planning Iceland for March. I know that filling my diary is my way of living life to the full and getting all the good experiences I can, in light of the reality of breast cancer. In a way I hate to even admit that, but there it is. I’m saying it out loud like you @naughty_boob. Life challenges us and we never know when these challenges will appear, so I like to have as much good stuff planned as possible to counter the crap and my fear of it.
Keep putting one foot in front of the other, dear buddies.
Just back from the hairdresser’s, lovely lady refused to take anything for trying to tame my sticky out everywhere hair and asked me to donate it to bcn instead. There are some kind people about!
I did think when I had the chop before chemo, my hairdresser/expupil wouldn’t charge me but no they still charged full price. It wasn’t that I was being cheeky thinking that but it was the context in which I needed my hair cut and had it been me, I wouldn’t have charged someone. I do wonder if I have a different set of values to many people. Had I not been charges I would have donated to BCN. I recently did a couple of research projects that I found via BCN voices in which I was given a voucher as a thank you for participating. I spent the vouchers on a treat, Waitrose meal dinner deal so I didn’t have to cook one night and the donated the same about to BCN. I di so if they could donate to the charity direct but the system used doesn’t all this. But this way, I got a nice meal nd the charity got a donation.
@salbert - welcome back! It sounds like you had an absolute blast !
Now you may crash and that’s normal …you’ve crammed so much in to a week … listen to your body and just take it easy , it sounds like an amazing experience . Happy 90th to your mum too
@boobitis - it’s normal that right now you feel overwhelmed and wonder how you’ll manage , the truth is … you will … I’m a pathetic wimp and the worst patient and surprised myself at how I just “cracked on” for want of a better word … (despite crying inside !)
I didn’t have expanders so can’t comment on that bit tbh I found my recovery from my mastectomy was ok really … I was never once in pain as my hospital put a nerve block in and I didn’t even have a drain . The worst part for me was feeling so tired after the surgery
@kartoffel - I think it’s perfectly understandable where we have had so many treatments that it just becomes overwhelming and exhausting . The thought of yet more surgery and recovery time afterwards just feels like . … “I don’t have time for this!” Coupled with your friends recurrence that must feel hard because apart from feeling so upset for your friend, it can ignite new fear in ourselves too… which doesn’t help.
Just be there for your friend… as a listening ear… It’s hard to know what to say as she’s probably feeling angry, frightened and upset do all you can do is hear her x
@rrey It’s so lovely to see your family holiday pic, what a fantastic way to spend your 40th, congratulations! Xx
Just a reminder too to everyone about to have chemo or rads, don’t forget to apply for your little lifts box , they really are so helpful x
Hi @ibizan55 so sorry you’ve found yourself here and for the pressure your work is adding. Do come on the HER2 thread whenever you feel like it, lots of things both positive and challenging come on here, have a read back if you feel like it. These ladies are truly amazing and will offer grounded ideas and a virtual hug whenever needed. Love and hugs
Oh my gosh I was diagnosed October last year too, and I just turned 40 in July. What a wonderful thing to see you’ve gone on holiday! We also cancelled our holiday in April, hopefully we can rebook next year. This year I feel I just need some peace and quality time, we are going to the UK lapland this weekend with our little boy. Best wishes to you xx
Congratulations @hoggie for starting on the next stage - soon you will have another bench slap opportunity
I also had 2x5 sessions. My team were always talking about my skin, which was never anything but absolutely fine (possibly because I used Flamigel from day 1) BUT what I wish they had warned me about (and didn’t) was the pain! I felt like I’d been kicked in the chest. 6 months on and I still have a sore rib and tender (& swollen) boob. Though it’s definitely calming down…
One thing I’ve learned throughout all this is how differently everyone’s body seems to react to everything, so hopefully you won’t find it too bad, but if you do get pains please be reassured that when I poked my team about it they told me it was all perfectly normal. Though I’m sure you will mention to your team too - they do need to know what’s going on for you!
@naughty_boob@cass2@carrie5@salbert thanks ladies. It’s such a shit situation and I knew that it would likely happen at some time that someone I know would have a recurrence since I know too many people with cancer. I just didn’t think it would happen so soon (less than 2 yrs after dx). She’s lucky that she’s got a new onco that’s already got her started on treatment but it’s still a shit situation.
@carrie5 I don’t think I have any TIME for anything outlandish in the next couple of days… I’ve literally got every second scheduled until I have to be at the hospital at 7 am on Tuesday. We’re going to do an immersive theatre/video game something or other with friends of ours on Saturday which should be fun and distracting.
@salbert I’m glad you enjoyed NYC hopefully it was worth the wait.
@carrie5 and @naughty_boob when I got my remaining few strands shaved off, the hairdresser wouldn’t hear of charging me and it’s those little kindnesses that go a long way. Knowing strangers care makes a difference.
@arty1 Good advice, as usual. What do you know, but I’ve come down with a bug that has left me with a head that feels like it’s stuffed with cotton wool, a scratchy throat, a cold that feels like it’s about to break and zero energy. I’m sitting behind my desk willing people not to come and talk to me. I guess it was inevitable. I am now vowing not to book anything else into my diary between now and the end of the year.
Hello and welcome to @ibizan55 and I’m so sorry you are feeling so unsupported. You will find lots of it here. Here is another hug for you. It’s insane that your work colleagues would make a fuss around a big toe cyst but not breast cancer! Incredible.
@kartoffel I have just found out another friend has cancer. It’s so bloody common. Why, oh why was I so sure it would never happen to me?! That must be such a kick in the teeth to get a recurrence in less than 2 years. I know she doesn’t know us but please wish her our best and tell her to kick its sorry arse again. I think it’s probably a very wise move to have your diary rammed until Tuesday. We well know that distraction is key. And yes, NYC was TOTALLY worth the wait. I actually feel nostalgic for it now. It was wonderful and interesting to see who won the mayoral election after seeing all the commercials playing last week.
@kartoffel - distraction sounds good … x
…I seem to know quite a few people with breast cancer too … I guess a recurrence has to happen to someone … the more people you know with it
@salbert - it’s rubbish to get payback from such a fun time! Totally worth it though ! Get some sambuccol… it’s great stuff x
Thanks arty1. Wise words…life is definately for living now. The difference between beibg diagnosed with cancer and those that havent (becoming rarer!) is weve been goven the heads up over our mortality the rest can carry on playing the denial game. In that sense I appreciate the gift of cancer , alongside the priviledge of meeting awesome people on my path.
My mum has been diagnosed with ER PR + her2 negative invasive ductal cancer with dcis. Mammogram original said 1.1mm Her Prosigna test is high, grade 3 and actual size 2.2cm. 1 out of 2 lymph positive:
She has had a lumpectomy and clear margins weren’t attained. Another lumpectomy and a again not clear. This has been 4 months total.
The drs have referred her to chemo now.
Has anyone experienced this and can help me not panic?
Hello @worrieddaughter I’ve just spotted your message, really sorry to hear about your mum’s diagnosis. I suggest you put on a call to the bcn nurses here. They are incredibly helpful and will be able to talk through your situation and maybe suggest what questions you and your mum should ask to clarify the treatment plan.
Very best wishes.
Haven’t posted much but always read through what’s going on with everyone.
Anyway, I am due to have my final Herceptin injection next week, (18/18). My oncologist wants me to then take neratinib. Is anyone on this or got experience of it? Reading nice guidelines it seems it is quite harsh on the bowels, and having had diarrhoea when having chemotherapy I really have doubts about it. Oh, and my appointment today was at 11am, and I was finally seen at 3pm, which is slightly better than a previous experience with this oncologist.
Hey my lovely group, so happy you are here no matter what curve this stuff takes in our lives. @salbert you always have the right words, very soothing thanks for that. I told you my little one cracks me laughing, we have good support from friends, my mum will come over again for the first week post the mastectomy so she will be a nice distractor and also his school teacher and the safeguarding deputy head have been lovely and will support us with drop offs on that week as my mum would not feel confident picking him while I recover. My husband will continue to drop him every morning. I just kept everything age appropriate as my councellor suggested and not giving lots of details, will be tricky to keep the drain out of sight but oh well… @arty1 thanks for your reply and I hope I will have similar recovery to yours. It is so reassuting to read other people’s good stories.I will also have a nerve block and I will have drain for 5 to 7 days oh well.
I met the surgeon today and he is very experienced, he spoke so slowly to me letting me to take things in, I sobbed a lot at one point, but that’s me over last 7 days, composed and ready on one head and a total wreck on the other. I guess he was just very realistic similarily to the breast nurse, I wanted them to cheer me up but they said you need to manage your expectations, it will not be like your real breast, you will not have sensation, your body image and sex life can get affected, the full reconstruction can take well over a year, he gave me more realistic exchange surgery date so I know it’s a process. I knew all he said but yeah it just hits you to hear it.And finally the surgery is in 4 days. Trust me it’s surreal as I saw and heard so many fireworks due to Bonfire Night on my way back home which is like celebratory to remove cancer but also it’s the final show for me with two real boobs. I never thought about my boobs so much, like oh, my 42nd birthday I will have no boob hahahaha. As if when I have had two of them I cherish that on all these occasions… he said that I have good natural size and proportion to be happy with the implant and even said he can use my other nipple to reconstruct my mastectomy breast with it. Then he said that chemo, in his opinion, is very unlikely. I mean he saw the images and the findings so far but I am not expecting anything until I have that pathology back. Last 4 days with sensation in both boobs. And starting the most dofficult bit. But at least cancer is finally moving out! So what that there will be plastic on that side of my body. I am not defined by it! Hopefully x
Sal,
Thank you so much for posting your journey. Mine has just begun, as of 11/3/25. Biopsies on both sides came back IDC. Positive note is they are really small. Left is at 0.7 and right is 0.5. I don’t remember much of the phone conversation, but there is still a pending result. I think it’s for the type. I will get that result tomorrow and will meet the my oncology team 11/13. They did an ultrasound of my left armpit, which didn’t show any enlarged lymph nodes. They called today needing me to go back in to check the right armpit tomorrow. Seems like I’m floating on a cloud. Reality hasn’t set in yet. I am blessed to have the best husband and 3 daughters (19,22 and 24).
Hugs, DaNae
I’ve literally got every second scheduled until I have to be at the hospital at 7 am on Tuesday. We’re going to do an immersive theatre/video game something or other with friends of ours on Saturday which should be fun and distracting.
hopefully it was worth the wait.
Incredible.
In that sense I appreciate the gift of cancer , alongside the priviledge of meeting awesome people on my path. 
xxx