Breast Cancer Now Forum

Hi...see my pic? Well, that was me just after 4FEC100 and 4Tax. CC doesn't hurt; after first 10 mins you forget it's there. It's just a hassle because it takes so long. I just kept reminding myself that it might be a hassle investing so much time in it at that point, but it would take YEARS for me to grow my hair again. Lost a bit at the sides where cc didn't fit terribly well but it didn't notice. Thinned slightly on top, but again, it didn't notice. I added 15 mins to recommended timings before and after as hair is v thick. Used conditioner on hair before putting cap on (Paxman site explains why) Hardly washed hair during chemo, just kept it under a buff or scarf. Used a baby shampoo when I did, and was v gentle. Loads of advice and info on the Paxman site. Keeping my hair kept me sane. I hope it works as well for you. xx Edit: um, just read the whole thread... top tip from me. Tell your hospital that you want to take control of the cc process yourself. Wet and condition hair yourself (you will do it properly), put cap on and adjust so it is on tight all over (only you know this, you can feel it and the nurse can't), make sure you try on all cap sizes before start and decide for yourself which one fits (remember the colour code and check they have cooled the right one each time. On 3 of my 8 they had cooled the wrong size cap), look at the controls and make sure temp is cold enough before starting (all info on Paxman site. Twice they wanted me to use it before it was cool enough), make sure timings are right by checking recommendations yourself (my nurse gave me the timings for tax when I was on FEC). I don't think I'd have had such a good result if I had left it all to the nurses. ... View more

Thanks for your support ladeez. Haven't posted on here for a while as was hoping it'd all go away but even though tx finished, it hasn't. Has savaged every area of my life. Ho hum, onwards and upwards, eh? Much love xx ... View more

Thank you Jane. 'Like' 😉 (...and hope you're doing ok too chick xx) ... View more

Agree with hipchick. Also BC is not one disease. My, er, friend, 30 years older with a 5mm Er+ stage 1, grade 1, told me I was 'getting a bit over-focused about BC' and 'she didn't know why it had affected my life so much'. Ahem. And, 'after all, (she) had found it barely worse than a bit of 'flu". So, she had a lumpectmy only, no chemo, no rads, no follow up drugs.Her kids have left home. Her chance of recurrence is 4%. She's retired and very wealthy. I had stage 3b, HER2+, grade 3, mx, 8 lots of chemo and 50Gy rads. My chance of recurrence is 70% I lost my business, am almost bankrupt and my OH is prob gonna leave over it all. Can't find the money to help kids at uni. House prob going to end up repossesed. I also had someone say to me yesterday 'oh don't worry, BC is one of the curable ones'. BC is not one disease :-(. ... View more

My GP: OK, so how are you coping...er...generally? Me: Hmmm, ok, but to be honest, my prognosis is quite poor and it's difficult to live with that. My GP: Well, perhaps it'll be better now the treatment has finished Me: {{thinks...eh? what does she mean, that's what I'm talking about}} Er... well the prognosis is still not great, I mean I have every poor prognostic factor there is. My chances of recurrence are... My GP {{interrupts, complete with song-sng voice}} Ooooh except YOU have a positive attitude!!! I have never discussed the cancer with my GP, other than to ask her to contact the hospital. What makes her think I have a positive fluffing attitude, and even then, what is she saying? Ah yes, perhaps my negative attitude is why I got cancer in the first place. ... View more

Bump 18 July 11.30 Browns, Queens Street Bristol All welcome - (not only for people with secondaries) ... View more

Hi Flossie2. I live near Glastonbury in Somerset but go up to most of the Bristol meet-ups at Browns too. Come along to the next one! 🙂 ... View more

. ... View more

. ... View more

Hey mods, surely people can only read our profile on here (and therefore our Fb contact and other info) if the profile is NOT set to 'contacts only' ? i.e. people can put their Fb info on the profile on here but set it to 'contacts only', thereby making it private...just means you have to request an add... Also, for others, the threads on this forum do come up with alarming ease when googling bc stuff. Fb itself caan be much more private! ... View more

. ... View more

Bah..posted a response here but it's not there. In brief.... Nice to see this thread still running ladies. Just a pointer on 'evidencing' the vit D issue to mainstream doctors without having to convince them of the value of one piece of research over another. The British Dietetic Association, well respected by them and usually very conservative (seemingly avoiding the cancer/diet issue), state quite clearly in their vit D fact sheet that there is a link between lower vit D levels and breast and prostate cancer. They also note the vit D/diabetes link. Factsheet is downloadable from their website. Also, you can get a vit D test through a gp on the NHS. Hmmm, at least where I live. Enjoy the sunshine today 🙂 ... View more

. ... View more

Hey...that is bloody great news. I'm so pleased! x ... View more

I just wanted to clarify my main point and explain a little. Maye I sounded a tad flippant in my earlier post? Some diagnoses (mine included) are pretty heavyweight. Within days of being diagnosed, I knew my prognosis (which, like nymeria's, is the wrong side of 50-50). At the time, I wanted facts; 'top line' overviews didn't help me to feel any better (and still don't). I wanted to find someone else with the same kind of cancer as me, who'd had the same type of treatments. Whilst it was heartwarming to hear 'survivor' stories, they held little comfort for me. I wanted to find anyone with WHAT I HAD who was alive and NED 5 or 10 years later. Only hearing 'good news' stories from people with a different diagnosis just made things worse. It was a horrible time. I couldn't find what I wanted on this site. I went over to the HER2 support boards, where some excellent information was available, along with constantly updated research data and other med lit. So again, bravo to those who were kind enough to volunteer their stories. I know though that had it have been around when I was dx, it would have been far more meaningful to me to have seen someone with my diagnosis. Of course, perhaps that isn't how most people feel? xxx ..Thinking about it, couldn't I do just that? Submit my contribution with details of my dx and tx? ... View more

Does not get my vote as it is. There's no information about anyone's original diagnosis. How can any comparision be made? Dividing the site up by 'years post diagnosis' is meaningless. This matters. Treatment will have been quite different. Prognoses are radicially different, as are temporal patterns of recurrence between different types of cancer. Primary breast cancer is more than one disease (and so, come to that, is metastatic breast cancer). The target audience isn't clear. I'm guessing that the point is to offer some hope to women who are newly diagnosed? If so, then well done to the kind people who volunteered to appear on the site. ... View more

There's a meet at 1pm at the Cosy Club in Taunton. This is a Somerset CanDo bc networking event, but all peeps in the area are v welcome. Go to http://www.facebook.com/somersetcando and request an add for more info and future invitations to our meetings (send a message saying where you saw the contact info) xx ... View more

So sad, so unfair. Much love. x ... View more

Think there're 4 definites and 5 probables on the Facebook list. I'll drive up to Bristol as long as my garage finishes the car brakes on time! T. xx Oh, and for the person who asked me... although this is in the secondaries area, this meet is for anyone; ... View more