Joan47 - yeah I know I’m lucky to have a friend like him & I’ve been such a cow to him over the last few weeks but he sticks around. I really wanted to work but there was no real option to work from home in my job as it’s a very hands on role & I’m out with my reps 9 out of 10 days. It just isn’t practical in terms of the driving or risk of picking up infection as my reps call on retail stores and the oncologist didn’t want me doing that. Thank goodness my sensible self took out a life insurance with critical illness plan a long time ago & that just got paid out so at least finacially I’m set for a while.
Booksandwine - I do have quite a lot on my plate but I’ve ‘parked’ my marriage problems right now, time to be selfish and think about me for a change I think. I’m finding it tough not being at work, I’m used to being busy and I find myself with all this time on my hands which I hate. I don’t get European travel with mine but I do get to drive around great chunks of the UK and I’m missing that. And I am a bit of a party animal!
loulou - mine started shedding properly on day 18 and got steadily worse until day 5 of 2nd cycle and it;s still shedding but much less. I’m not convinced the cold cap is working athough maybe it would all be gone by now (day 9 of 2nd 21 day cycle) if I hadn’t used it. my hair started hurting about a week before it shed and it only stopped hurting 2 or 3 days ago. I’m just waiting for the day 18 shed this cycle. I hope you don;t shed too much. Good news about the tea though! My taste buds are shot to pieces.
lovewine - welcome to the group, I’m a newbie myself but already found great strengh here
So a couple of questions: Can I tell what dose of FEC I’m on from my chemo record? And have you all had bone and CT scans? I was told I didn’t need them by the oncologist as my lymphs were clear but have now been sent appointments for this week and when I phoned to ask why I was told it was because they had reviewed my notes. Now I’m more than a little scared because I was kinda holding on to the fact that my lymphs were clear and I’m not sure what this means now
Welcome to the BCC forums where I am sure you will find support and shared experiences, please also feel free to all our helpliners to talk your diagnosis/treatment queries over, lines are open during the week 9-5 and Saturday 10-2 on 0808 800 6000
You may find the following link to our ‘Just diagnosed’ information and further support helpful, we also offer specific support to younger women including residential weekend Information and support where you can meet others in a similar situation to you:
And booksandwine I went 2 hours on a train to Oxford to see a New Model Army gig the day after chemo last week! Have suffered for it since but oh so worth it
Hi to you all, and I am so happy I joined your thread as you have all made me feel so welcome and the support is fantastic. I have actually managed to work part time as I am lucky enough to run my own little ironing business with lovely regular clients- I go and pick it up from them and then come home and can do as little or as much as I feel like! Have found the normality quite nice amongst everything else going on, I must admit my chemo unit has made me very paranoid about going anywhere because of germs etc all I seem to do is walk my dogs away from the general population so I don’t pick up any bugs etc! I am desperate to go shopping! Have found after my second fec I wasn’t quite so sick as they changed my drugs to Emend which was much better, but feel very tearful and fed up today, which after reading a lot of your comments seems to be quite common on the 2nd week, am also having the 5 day booster for white blood cells and that doesn’t help! Thankyou for making me feel so welcome all of you xx
Smokecloud go you confess had to google band though. I actually find the day after I’m sort of ok then the bloody sense of false security kicks in and by day 5 I’m stuffed for a bit.
Re percentage of dies not sure re notes but the nurse sits with me for the first 3 red bags and she told me I was on 100 percent dose. As it’s made up tailored for you each time guess if you were normally 100 they can change to 80 if and when you needed due to side effects. I know one of the forum ladies had hers adjusted one time sorry can’t recall who at moment.
Re scans. I had bone tc and MRI before treatment. NB I was to have had op first but scab revealed poss lump on right and node on lung. It sounds like they do try to scan you first if poss I also have an MRI scab set fir after third chemo before I change to fec probably to plan fec dose.
If you feel you are being mucked around or they are not being as quick or thorough. Throw toys out of cot. My partner and I have a deal he’ll play bad cop if he feels I’m getting run around. Which to be fair they have been good my / our only gripe was the BCN I first had she told me over the phone I had cancer she was trying to be efficient and have me come in for bloods and give me info on scans she’d booked before I saw consult for full meeting the next week but I just didn’t like her and she really bleep my oh off He’s direct and she started to be fussy prissy and holding back on some info so when she was on leave when I met the oncologist ( confess I had to find out via google chemo specialist lol lol come a long way since feb ) she was on leave and I swapped to her colleague Northern chick very direct and magic.
Anyway ask re dose and re scans take a cd for MRI it’s frigging loud
PS Moan for the day went for walk in sun had pub lunch wine tasts like acid must note that in my symptom diary roll on next week when I can enjoy a vino
Hi logicienne. Welcome. Can’t help re nursery I don’t have children. But re paracetamol I find taking at night helped to overall relax me and I generally sleep better with it.
Also recommend you get a prescription for constipation issues don’t take sachet stuff yuck Reason I say is it can be a little uncomfortable but comes right.
Yes re water but I find I mix up with other drinks when tastes change.
Re understanding it call call the bcc line they are magic and will explain and also send you excellent info. I know there is also specific support for younger women under 45 should be on their site they do 2 day workshop might be interesting. Hope all goes well
Lovewine. Glad your with us but of course we’d all rather not be here !!! But great to know more about you.
Re germs infections etc. I’m bloody glad it’s summer I confess I feel already pretty curtailed by this so I’m saying stuff off to bugs and when I feel up to it going out when and where I want Not sure if it’s the best advice but out of 3 weeks I have around 10 to 12 good days and I still need to plan around oncologists dressing changes so makes weekend away tricky So I have a list of day trips and enjoy pub night out. I guess really where you can live normal. Did you read about Rosie tripping to see family from Cyprus amazing.
Now re shopping unless groceries (get then delivered ). Have fun go out
PS love dogs I’m sure they will keep your spirits up
Booksandwine , yes I agree, stuff it to germs, have been like a prisoner as felt so paranoid! And yes did read Rosie’s post about her trip to the uk! I was in awe of her and good on her!! I think I will take a leaf out of your book and plan some days out etc, wanted to do an overnight trip to oxford with husband so think I will book for my good days!! Have had food shopping delivered but would like some clothes shopping therapy! And yes I love my dogs and I have to walk them which is good as even when I feel crap once I am over the fields I feel uplifted and much better for fresh air, x
I have children at school as well and the eldest has just got over a cold, all I can do is put bottles of hand cleaner everywear and insist the kids use it when they come home. I also use it all the time. A bit of info on your diagnosis, Er 8/8 means you will benefit a lot from hormone therapy after chemo and radio. HER - means you wont need herceptain, which shortens your treatment. As for the Macro and micro, a macro means cancer was found whist a micro is a tiny trace of cancer that has only been able to be seen in biopsies for about the last 8 to 10 years as the microscopes are so much stronger these days. My bcn said 10 years ago ladies will have had micromets and never have known, just shows how much progression there is in treatments .
Smokeclouds dont worry too much about scans, every nhs trust does things differently but a lot dont scan unless you have 4 or more nodes affected or lobular cancer… assuming you dont fall into these categories it is normal not to have scans. I know its worrying and I constantly have little niggles thinking I need a scan but medical team have advised no scan unless a symptom persists such as bone pain in one place for longer than two weeks.
Good evening ladies just got back from hospital been diagnosed with infection got lots of antibiotic and feeling fed up. No signal in hospital so just caught up with all new posts. So glad to hear that so many are having some really lovely days and interesting night out.
Loveswine welcome and I hope your cancer journey is uneventful .
Tell u what this cancer thing puts it all in perspective doesn’t it blimey when i think of all the stuff i used to stress over and now just having a tea that tastes normal would be fabulous x
Evening all,
Welcome louise3721 I’m so sorry to hear you have just returned from Hosp & fed up - not nice! I totally agree with you on one of you’re other posts - what the hell is this stuff that’s being pumped into our bodies?! Makes you like a zombie doesn’t it! But like we all keep saying got to be done & lucky to have such treatment. I am on day 6 of 2nd FEC so feeling a lot better but still not braved a cup of tea yet! I hope you feel better soon
Loulou1262 well done for working in between cycles! I haven’t used cc so can’t help there but hopefully it will slow down & you can grin & bare it coming out a bit. I’m glad I’m not the only one feeling so tearfull - i have noticed it seems to be when I’m taking the anti sickness tablets & steroids so going to ask about them for next time.
Smokeclouds I’m like you & so far have been fine & kept so strong & don’t do crying either! I think sometimes I hold it in as if I’m OK then everyone else is OK - I don’t like fuss! You’re friend sounds like a real star! I had a ct scan & they said it was just for a ‘baseline’.
Sorry to hear you where feeling a bit crappy Rosie 14. Hope you’re picking up now. Thank you for your post to me - you’re totally right & am back to my positive ‘next one is half way’ frame of mind!. I remember you saying you are every 2 weeks so I blooming take my hat off to you girl - you hardly ever moan about it!
Welcome logicienne,bless you with all you’re little ones. Must be hard going for you,I’ve got a little 21month old little girl & she’s noticed I’m too tired to play all the time & have to try & rest when she does - rarely! I have been used to taking her to every group going & so my chemo nurse just said to try not to as much on day 7-10 go to the other end if the room if you see a snotty nose! I have been taking paracetamol for headaches - they said fine,I’m on 6xfec-t. Good luck you’re precious babes will keep you going.
It seems emotional times for all of us wildpurl & I think every man in the world wants to run for the hills when we cry! Hope your hair still not getting to you.
I agree with you books & wine - we’ve got a good bunch on here haven’t we! Hope the heartburns gone now! I’m still awaiting my wig - glad yours is looking good! I really need to get my ass on one of those lgfb courses! Am planning a girlie night out on the 10th!
Welcome lovewine I’m her2+ as well so having herceptin on 4th cycle. I carry anti bac gel with me everywhere I prob seem like a right freak to other peeps but I don’t care if it works!
Went to a health food shop today & got some ‘moogoo’ cream - my mum researched it & really good for different skin conditions & when on chemo. The man also recimended ‘bio strath’ supplementation whilst on chemo so got some & will see what oncologist thinks! Any of you heard or tried any of these?
Take care all xxxx
Morning rosie14!,yeah that’s an idea - don’t blame you on a plane where you can’t really get away from peeps! I think I’ll just plan to go on long walks & play sand,water,painting with her at home when its low immune days just to be on the safe side! You sound funny leaning out the window with you’re scarf! But got to be done! My cousin & his wife used to put a sign on their door saying no visitors on her low days - for the sake of a few months its worth it!
Auw wow you’re so organized - so good you’re planning that far a head! I’m a bridesmaid for my best friend in sep so planning to make a real day of it & a bit of a celebration for me as will be finished the majority of all of this by then & will really look forward to Xmas even if I’m working as last year I found the lump 22nd Dec so was in limbo land untill 23rd Jan - as you have all experienced! I’m sure you’re husband will love it?!
Hope everyone doing well,sending strength to you all xxx
Morning everyone, I am day 7 from last fec, so feeling more normal, I do find in second week I am really hungry all of the time, have developed a liking for wine gums and fig roll biscuits!!a
And yes Rosie 14 I also use my scarf when in our local shop to put over my nose and mouth if I see any sign of coughing!! So they really have their uses! Days out are the answer I think for the low moods: definitely need something to look forward to amongst all the hospital trips, I am also thankful to be in a group of ladies who are having chemo first as I seemed to be the only one in my hospital group! I do find it hard to still have the lump as I am sure you ladies do too? Have a good day all of you, I especially feel for you with small children trying to keep them amused etc whilst feeling crap, but also it gives you such a strong purpose and you have to just get on with everything!!
P.s just wanted to ask you all; is it ok to use a fake tan on your legs( like dove hint of summer/ johnsons etc) ? Now the weather is warming up I want to put the boots away but legs and feet are deathly pale! I did ask the nurse but didn’t really get a straight answer so not sure! X
Glad you’re both feeling better love wine & logicienne:) once you get past day 6 its a dream - just always seems a long way off but gotta hang in there & push through! I struggled to see sight of it this time so glad I’m there now! Its funny the cravings you get love wine - last time I couldn’t face anything sweet & pretty much lived on crackers & nuts! This time ive enjoyed homemade soup,jelly babies & mint sweets! You’re both right about the little ones - hard to keep up first couple of days but you find a way & wouldn’t have it any other way! I’ve used dove summer glow stuff so far love wine & didn’t even think to check! But like Lou have has been fine & makes you look a bit healthier! I think as long as you still wear a high factor sun lotion & obviously don’t go out in sun for too long that’s the main thing as skin so sensitive now xxx
Ladies you are all brightening my day. Here we all are having to go through really tough treatment and having bits of us surgically removed not to mention going bald and still we care about having tanned legs ! Fab I love this positivity