Breast Cancer Care Forum

Thank you so much everyone, today has felt like an easier day, and I'm in a slightly better place with the hair. I hate pulling out handfuls, and the bald patch which is growing on top, but it was less of a shock today. I've known all along that it was coming, and thought I was prepared, but I was shocked at how hard it me yesterday. I've been for bloods today, and they're all good, so FEC2 is Thursday. Kitkat18, thank you for your reassurance. I don't want to upset anyone with my decision but me husband reassured me it had to be my decision and about what's right for me, so I've brushed off a lot of what was said yesterday. I still think shaving will happen, I hate the prickling, burning, and it's floored me that it went from absolutely fine to sudden shedding everywhere at alarming speed in about 48 hours. I've asked more about the cold cap today will continue as my onc nurse confirmed it would grow back quicker with cold capping. I've left a message for the BCN team, and should be getting a call, when I can ask more. B74 You are very kind, especially when I was on such a downer. I just felt totally overwhelmed and can't believe how supportive everyone's being. I feel myself going to a pretty dark place every so often, but I've somehow pushed it away and kept going. I won't always be able to do that. I sobbed on the day of my first breast clinic appt when I had the mammogram, ultrasound and biopsy, but that was back in October. I've not lost it since then, but maybe I do need a good cry!! Kip, thank you for so much support and information, you are quite amazing. I've collected some info on wigs today, and the place they recommend is about 3 minutes drove away! I've bought a pretty scarf and was planning to go to the Macmillan Centre at the hospital on Thursday to talk some more. I'm wearing a soft, woolly hat just now, but want some more lightweight ones as my attractive bald patch grows! I never feared the surgery or people's reactions post-op, but hair loss was the thing I feared most and, as you mentioned, being 'the cancer patient'. I'm talking to my boys, we've been honest with them from the start, and while my 4 year old has made me tear-up several times with fears I won't look like me/won't be pretty, he and his brother know I may 'buzz it away' and why, and we've spoken about wig shopping together too (although, I'm a bit worried about what I might end up with if their taste in Christmas decorations over the years is anything to go by!😆). I'm hoping the BCN team will get back to me tomorrow - I couldn't get through today and had to leave a message - so I can talk things through some more, including prosthetics as, much as it's good to have my husband beside me, I think I need the detachment of a BCN right now. Thank you for making me take a breath and reminding me I can get answers, both from the BCNs but also people of here. It's good to feel understood, and reassuring that much of this is what we are all facing. Sparkie2001 Thanks also, sadness is there for me too. It's funny how I was so sure I was ok with it all and prepared, but have been a mess nonetheless. I think maybe there's no way to prepare yourself really when it comes to holding a handful of your hair and not recognising your own reflection. I suspect shaving may ease my transition too. I went from very long to short before Christmas, in order to prepare myself, and it definitely helped. LB2 I'm going to loom online after the boys have gone to bed tonight I think. I suspect I'll try a wig too at somr point, but the hair bands, hats and a sleep cap do appeal. Did you buy your band online or in a high street shop? I looked at some today but wondered if they'd be sufficient. They were quite pretty. I feel I owe a great many hugs today for everyone who picked me up yesterday, thank you all so much for putting up with my 'woe-is-me' session. ... View more

LB thank you. I'll ask more questions tomorrow. It's so odd that I got up and felt bright and perky, unphased, and now, at the other end of the day, just overwhelmed and lost. My friend messaged me this morning and asked how I was, so I said I was dreading Thursday arriving again, but feeling like me and I must be being totally oversensitive as her reply of "You're lucky, chemo can be A LOT worse" just made me want to scream. Am I being really self-obsessed? I genuinely felt good today, until I binned piles and piles of my hair. Sorry everyone, I'm bringing down what's such a positive thread from so many strong women. ... View more

Sigh!!!! I keep finding I need to retreat for a day or 2, and when I get back on here, there's so much to read that I never get through it all and feel like I'm missing important tips etc. Some days are ok, but today has been hard with my hair just coming out in handfuls. I now have a very wide, bald line, with thin patches either side, rather than a parting. I've had very long, very thick red hair since childhood so, at 41, it's been like killing a huge part of my identity having it cut before Christmas, although fonating it felt good, but I really felt like I needed to get used to seeing less in the mirror. Part of me thought today that I should just get on and shave it off, rather than prolong the inevitable, but my mum cried and said no, it was too soon and unfair on my boys (4 and 7), and my mother-in-law said I need to sit it out for a couple of months or, even better, wait until after chemo has ended. I have no wig, no idea where to get one, no idea where I get the 'voucher' I overheard reference to at FEC1. Should I have that sorted first to soften the blow? And, with snow forecast, my loose-knit hat isn't going to help a bald head stay warm for long. Should I be fetting something lightweight to wear underneath? Can you get soft, stretchy hats anywhere, which coold be worn indoors of out? I've only done the first FEC out if 3 (then 3 x Docetaxyl), with the 2nd on Thursday if bloods are ok tomorrow. I cold capped and now wonder, with this much loss in the last 48hrs after just 1 treatment, if I shoulc still have it on Thursday or not bother. I just don't understand the benefits enough and I've found my head is a mess since treatment started. I'm forgetful, disorganised and easily confused. Will it help it to grow back at thend of chemo if I continue with it? I have radiotherapy after chemo, and 10 years of hormone treatment, and I know I'm HER2- and ER+, but had no idea there was a scale for measuring the degree of responsivity. Is it out of 8? Can I find out tomorrow when I get blood results? And what are the implications of an 8/8 score, compared to a 2/8 for e.g? Does the score dictate or link to the chances of reoccurrance? I want to see my scans to see the beast I'm facing, although I had a mastectomy and axillary clearance, so presumably I'm just on damage limitation and cleaning out now, but it's never been offered. I had a CT, which highlighted 2 tumours in my liver. I had an MRI, which suggested one is almost certainly a haemangioma, but that the 2nd is less characteristic of one. I asked if it will be monitored when I saw he Onc at FEC 1, and he just "yes, probably", which didn't alleviate my fears at all. I also have some off symptoms, which can be linked to a brain tumour (amongst other things), so I should be having a head CT at some point to check. There's also been talk of genetic testing due to a very strong paternal history of prostate cancer, but I've just been tomd it will be done routinely 'in due course'. I know I have to focus on getting througb treatment at this stage, but that answer just leaves me hanging, not least of all because I just want my second breast removed. I have a brother and a sister, and 2 little boys, and I need to understand what this means for them. Can I ask why people are having heart scans? Maybe there's a very clear answer on herd that I've missed but I can't always come on here and open up. And when will I ever be seen for a proper prosthetic? I wore my comfies on and off after surgery (3 months ago), but they irritated when they moved and, while I'm not phased going out without my "boob disguise" (my 2 sons' term for it), and breast loss hasn't bothered me at all - least of my worries right now, tbh - I just wonder when that bit happens normally. FEC 2 looms on Thursday, with PICC assessment on Friday and, potentially insertion on Monday. I've tried and tried to move the latter 2 as FEC1 wiped me out, but to no avail. I'm so sorry for such a long message, I feel so overwhelmed by my thoughts and what's happening with my hair, but also by how much there is to take in on here. ... View more

Thanks so much G and B74, hearing other people's experiences really helps. I'll ask on Tuesday, when I go for bloods and to see the consultant, about something to help on Monday week for the picc. As it's an assessment is Friday (Mum is taking me so I think I'm just going to take a bowl and towel and hope for the best, but dreading), I guess they might say a picc is no good, and that I need something else. Again, guess I just have to wait and see wgat happens, and then take what they recommend and work with that - I may be back on here being a nuiscance with nore questions!! And the hair thing, it's shedding but only in the last 48 hours, so I guess I need to reconcile with that, and wait and see how long I can tolerate it for. I figure you know when you're ready, either because of the amount of shedding, or the discomfort (or both 🙈). Thankfully, the shedding's light and, unlike some areas of my body, I'm sensation-free at the moment. I suppose one or both of those will force me to make my mind up in due course. I'm so pleased I've found you all - Superwomen in droves - to help me through this. It makes such a lonely journey thst bit easier. Thank you all so much 💞 ... View more

Meant to thank you for being so lovely too. I thought I was tough enough but I am finding it hard now, and the hug is massively appreciated. Did you use the cold cap? I'm just starting to notice hair loss yesterday/today, but elswhere seems a lot quicker, so should I assume the cold cap's working? I don't know if I should just get on and shave it off, or if that's unnecessarily drastic when I've only just started to lose it. It isn't hanfuls by any means, just all across my hands when I ran my fingers through it. I've always had long hair, but thought I should get used to having less before Christmas, so I had it cut short. Did you lose that much in a week that you felt you had to do it, or did you just feel you didn't want to wait and see how badly you'd be affected, and just bite the bullet? I don't know whether to do it or sit it out and only worry about whether to do it when it starts to show? If I've had stinging and prickling elsewhere, should I be expecting the same with the hair on my head? ... View more

I had my workshop day 2 days before FEC1 and when they assessed my veins, they said straight away that I'd need a picc, but there was no way it could be arranged before my first treatment. I was told it would be a week, that I'd go in on a Friday for an assessment, and then back on the Monday to have it put in, so it was all ready for FEC 2. Like I said, FEC2 is Thursday, and my assessment's Friday, with a view to having it put in on the Monday after. My arm is so painful now, but when I called to ask if I could bring the procedure forward to ensure it was done ahead of FEC2 as I'd been told it would be, I was told if it could be done sooner, then I would have been offered sooner. I got all emotional and had to get off the phone, so Friday it is(and only for assessment), despite the fact I'll be less than 24hrs post treatment and barely able to sit up, let alone get to the hospital and wait in what I've been told is a very busy clinic with long delays. Happy days. My right arm can't be used due to full axillary clearance, so it's left or nothing. Is yours a picc or a cath? Why is it harder on the left? ... View more

Wantolive, yes, totally agree. I was shocked by how quickly I felt all fuzzy after FEC1 2 weeks ago. Coming home, I felt drowsey but, within an hour or so of being home, my head was swimming, and not in a fun way. ... View more

Looks ok so assuming I've done the right thing. So, after the first week, I seemed to ping back into 'me' again, which was a huge relief. Tired at times and headaches, but nothing severe, so I'm trying to get as much done as I can before FEC number 2 on Thursday. My appetite seems to have returned in terms of what I enjoy, although I don't feel especially hungry. Some smells really affect me still, although I'm so much better now and gaggibg left, right and centre appears to have ceased for now. 48 hours ago - so literally 2 weeks post - the hair situation has arrived. Feeling stingy in patches and didn't really realise what it was until I saw hair going down the plughole. It's washing off my arms and legs slowly, and almost gone from more intimate areas. I can deal with that fine, but seeing eyelashes and eyebrow hairs on my dinner plate was nasty and it's starting to fall from my head now, which is still a horrible reality, despite expecting it. I used a cold cap, so I'm waiting to see if what's on my head will thin or disappear. My 4 year old keeps curling in to me and saying he won't recognise me once my hair's gone, that I'll look strange/not like me/not pretty anymore. My 7 year old is a worrier and my fear was concerned yeaterday when the GP diagnosed him with alopecia. I have phlebitis from my surgery in November and, as I feared, I've now got it in second patch on the same arm, from treatment 1, which is painful. The nurse was lovely and said I needed a picc line before treatment 2, although the hospital couldn't offer me an appointment until Friday next week, so I've got another treatment to get through still before I can have it, and am braced for more discomfort. Not only that but, being the day after treatment, I'm going to struggle just getting there! ... View more

If I've done the wrong thing in trying to add an update, will someone explain how this new layout works? All I could see was 'Reply' in the bottom of each message, and I'm not replying, I just want to add a comment to the mix. Finding this layout confusing! ... View more

Been a bit off the radar since Thursday, and wow, what a busy thread this is!!! I have a lot of catch up reading to do, not to mention thanks to give to those who helped me feel more in control by offering advice and tips - thank you so much!!! So, first FEC is done and, apart from a swimmy head and ridiculous tiredness, I seem to have managed ok. I did the cold cap, which surprised as, after just 2 minutes in it was unbearable. My husband set a 15 minute timer on my phone and I kept watching it to get me through the worst bit and, once the nurse was there administering my reds and whites, I was less aware of it. Must find sone unscented conditioner to take though as Herbal Essences was slathered on for the cold cap and the smell made me gag terribly. Smell has affected me massively, and so quickly too, which I wasn't expecting. I've not managed much to eat since the end of the session, and I've struggled to know what I want. I've pretty much existed on whole grain cereal, wholemeal toast, fruit and sone soup. Sweet stuff doesn't appeal at all for now. Could really do with my tummy sorting itself out though or I'll be struggling. I'm eating dried apricots daily and taken 2 doses of Senna Max Strength in the last 48 hours, to no avail. Is that TMI?!!! Eating less and sleeping as I have been won't have helped but I haven't been able to do more. I've been asked to go in after my next treatment to have a PICC line. Maybe I'm being silly but win't it keep catching on clothes etc? Can it be taped down? I know it's not a huge thing in the grand scheme of things but a stringing arm from catching it on everything when I dress/shower/turn in bed etc sounds quite unpleasant. Has anyone else got one? ... View more

B74 and Jencat, you're both so kind, I'm speechless, thank you. Tomorrow is looming and I'm getting myself tied up in knots. I haven't had time to explore much on this forum or even read more than a couple of articles on the website, and the rest of today is hectic (probably a good thing as I'm not left in my pwn company for too long with time to think and stress!), so I don't think I'll get to browse much and could really do with some advice (sorry if it's already been said and I've not seen it). Yesterday's workshop was ok but I'd hoped for more tips and suggestions regarding what to take tomorrow. I know we're all different so some of us won't want to read or consider sucking a peppermint, but I just wondered what people would recommend for snacks, drinks, comfort levels, thimgs to do. I've got fruit and squash to take, some chewimg gum and plain biscuits. I'm FEC initially, moving to DOCET in due course, and wondered how others have find them in terms of severity of side effects. Should I take a blanket? Or slippers? Or is that daft??? I've been offered a cold cap so will all of me feel freezing cold??? I've heard references to painting nails. Should I do that tonight or wait and see what happens with discolouration? I've been told minimal hairwashing is best, with extra mild, unscented shampoo and no heat products afterwards. I've heard some say to use baby champoo while others have said it's a deifinite no. I've got Simple Mild Shampo, should I have something else ready? I've got a journal to take to write in, a book and an ipod. Good ideas or bad? ... View more

That's so kind, thank you xx I had my mastectomy in November, and have had my chemo workshop today, ahead of 6 months of chemo on Thursday and then 15 x radiotherapy sessions too, so similar. To think my husband and I were planning to try for another baby 15 months ago, but this was the path I was destined to follow instead. Surgery, pain, loss of a breast....none of it bothered me but Thursday terrifies me beyond words. I want to run away but there isn't a place on earth that's far enough. ... View more

I am new to the site as of 2 minutes ago, and due to start treatment on Thursday. Feeling isolated and overwhelmed, and struggling with family reactions when I've not even started. Just wondered if I could join this thread in the hope I find company from people who get it. ... View more