@wizzer Apparently I may be able to speak to the ‘work coach’ on zoom in future, the whole thing feels a bit Kafkaesque to be honest, now they have to decide whether i am actually a UK resident as i am usually out of the country for several months a year running art retreats and trips in Morocco (this despite me having my main home here, paying all my tax here etc etc) if they decide i am a benefit tourist I will get nothing and its a go fund me and outrageous hope that i can get back to work soon i guess. Getting back to the life that I had seems an impossibility so it affecting my benefits claim seems particularly ironic right now
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Thank you for the info, its really helpful xxxx
I am on a similar journey, lobular grade 2 stage 3, an enormous tumour that i beat myself up about until i realised there was no indication it was there until so late on, I started EC a week ago and am starting to feel a little better but am incredibly anxious that with everything i have read about lobular and chemo i may be putting myself through all of this with such an uncertain outlook. I hate to think it might make no difference but its hard to get over the fear that it might right now.
i am not going to stop treatment as i am guessing its still the best chance i have but i wish i was more confident
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@scribbler the benefits system is broken 
I’m sorry you’re having to go through that as well as having doubts about treatment 
I did a gofundme to help and my craft community /clients have been amazing - you might be surprised 
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@wizzer I am starting to think a gofundme might be a good idea, although in a way I would rather have more people sign up to my Patreon as I can give them something back that way xx
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Where did you get the wigs?
Hello, I’m a late joiner but have found all the posts here super useful. I found out on Thursday that I would be needing chemotherapy after all, and that it would start already on Tuesday (29th of September). I have stage 2 ductal ER+ HER- BC, and because I’m only 42, my oncologist was hoping that just surgery + radiotherapy + hormonal treatment + CDK inhibitors would be enough. But my Prosigna score came back as high risk, so here I am, getting ready for 4 EC rounds followed by 4 paclitaxel. Have had a productive day today: haircut, flu jab, and big pharmacy shop! Have also registered for some Look Good Feel Beautiful workshops - still undecided about the scalp cooling… For those of you who have done it, how are you finding it and the hair loss impact? Thank you!
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Hello @olivebranch
I had my first cycle of EC 10 days ago and used the cold cap, the first 20 minutes or so were tough and I got a freeze headache but after that it got easier, I think your scalp is so numb by then you stop feeling it much maybe? I had to have it on for 3 hours altogether and it wasn’t terrible so definitely trying again next time. I don’t know yet how effective it’s going to be as I am told you can still lose a lot of your hair, but it does also mean it grows back a bit faster afterward so if you can bear it it’s worth a try. Good luck!
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Just sending you some love as I am awake feeling grumpy about things and wanted to let you know people are reading your post and we are with you on this journey. Hold on tight xxx
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I’m sorry to hear you’re getting chemo thrown at you too 
I had my first Paclitaxel and Trastuzumab on Tuesday.. I felt weirdly normal for the first two days (except no pooping) almost like nothing had happened at all, but things starting kicking in on Friday i guess when the steroids wore off 
Yesterday was the worst with horrible hip and knee aching, an itchy neck rash, gacky chemo mouth and then a migraine where I also lost the ability to find words 
It’s like the perimenopause all over again, waiting for the next sucky symptom to hit but x10 
I still don’t think I’ll cold cap as there is enough making me feel rubbish already and I’m assuming losing my hair isnt painful at least!?
@scribbler I don’t know much about Patreon but look after yourself first - don’t commit to stuff that will be too draining - big hugs
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@wizzer day 10 now and despite having a crap night last night due to pain from GSF jabs I have been feeling more myself the past couple of days, even contemplating a bit of drawing later xx
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@coffeeandme I’m on the same chemo treatment as you. Every 2 weeks.
I had picc line put in on Friday. Chemo starts Tuesday.
Have you started your treatment yet?
I was told EC is about 3 hours long. X
Hey all, I’m feeling a bit rough on day 3 of filgrastim. It’s my second round and I hoped if feel a bit better this time around.
During my Docetaxel second dose, I had a severe reaction. I couldn’t breathe, lost the colour in my vision and my chest burned. Luckily the team dealt with it really quickly and it was over within 10 mins. I’m also allergic to zoladex, so I think it’s just bad luck for me and these hefty drugs.
I’m also making a lot of use of audio books through the night, and taking a bath soak before bed. I’m doing my utter best to eat and drink well.
It’s not easy!
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Thanks both have these ordered and ready to go x
Thanks will let him know
Hi @sunflower86 my treatment starts Wednesday. Had my picc line placed Thursday. I heard EC wasn’t too long as syringes but with cold cap takes few hr as wear before and after. Not sure I’ll manage it but wanted to try cold cap and the cold hand and feet therapy. Bought a battery heated blanket in anticipation.
Hope ur chemo goes ok Tuesday x
Maybe that’s why told 3 hours. As trying cold capping aswell.
how you finding the picc line, I’m abit sore but nothing to bad.
My nurse told me about Asda do picc line hoodies so managed get one of them to try keep abit warm.
Good luck for Wednesday 
Hi lovely, you don’t need to ice your feet & hands during EC-it’s only during the taxanes that neuropathy is a risk. My nurses also encouraged me to suck on ice lollies during EC infusions to stop mouth ulcers so that’s worth a try. I got one little one only (& it’s still there 10 months later!) Hope all goes as well as it can for you x
Thank you, @scribbler! Glad you’re managing the cold cap. I might try it as well and see how I get on. If it’s horrendous, can always give up on it.
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@wizzer i hear you about the months of feeling ill thing and just waiting for the next side effect. My last cycle will be in January and right now that seems such a long way away…
Yesterday was a bit crap as I was in a lot of bone pain from the filgrasrim injections, it’s the weirdest feeling, like your bones are feeling nauseous
Better this morning thank goodness but I am going to ask my Oncologist if I can take loratidine next time as I have read that it can help x
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