My onc said I'd get antibiotics as a preventative. He said it depends on the centre, some prescribe them like this and others only if you have an infection. Off to hospital again soon for MRI. It's all go isn't it! Xx
Joint pains can be a SE of chemo, particularly on Tax. Also, are you having the white cell count boosting injection(s) at all? If so, they can def cause pains in the 'long' bones and pelvis, collar bone area.
The advice I was given was to take my temp to check that I wasn't brewing an infection and then to take painkillers. For me one parcetamol and one ibuprofen taken at the same time did the trick and took the edge off.
As always though, best to get advice from your team before self-medicating! - They might be able to prescribe painkillers as well.
Take care all
Tracy I was also give a course of antibiotics to take starting day 7 for 10 days. I also dont know why?
They were in my drug bag along with the mouth wash and antisickness tablets etc etc.
I thought it was standard and everyone got antibiotics or it might be cause I had a tooth out the week before.
My lower back bone and upper leg bones have now begun to really hurt and ache -I could hardly sleep cause of the constant pain last night and my OH had to gently rub my back most of the night. Has anyone had this problem or is it because I was really busy yesterday and maybe overdid it with the 2 mile walk?
Finally feel a bit better stomach not somersaulting now but woke up with sore throat and headache the joys but i have done some tidying up this morning and feel a bit hunger im on anti biotic for 5 days is anyone else oncolgist put me on them in my drug bag they gave me i didnt ask why
Pixie good luck today thinking about you
Hope you had a great birthday Natalie
Lee i brought lots of healthy teas i cant stomach them i tried a lemon and ginger one yesterday it made me nearly sick i have gone off milk big time and missing my cup of tea in morning
Tash glad your feeling better i suffering from heartburn aswell im not looking forward to next juice if this is what its going to be like
Sara B i have 2 labradors golden and choc they love that im at home and walking them loads they never been so spoilt they will be upset when i go back to work
Gadget Gal So glad you been discharged there is no better place than home
Elaine im feeling alot better you have done so well with avoiding SE i hope to follow you next time as for the hair it seems ok it looks quite dry but not shedding yet but only on day 7 but my eyelashes seem to be falling out quite fast any one else notice this
Well welcome to all new bunnies and good luck to everyone starting this week
Lots of love
Thanks for the welcome! Chemo is at 1pm today and my mum is taking me like the first day at school - lol. She is visiting for a few days.
I have a huge range of ginger products at the ready, if I go off ginger I will be quite annoyed.
Yesterday I was pretty panicked and weepy, but calmed down at the new patient appointment. Now I just feel resigned to it all.
Good wishes to everyone,
Blimey, this cancer lark is a real roller coaster! I am sitting in my conservatory, drinking the oh so healthy green tea with mint, watching the birds and savouring the moment. For some reason, even the rain is stunningly gorgeous. Can't explain this euphoria except to suggest that it is because I don't feel sick or headachy or dehydrated or knotted up inside, For the moment. A decent night's sleep helps.
I know that I am only on day 6 post chemo and that the SE's might have plenty more nasty tricks in store for me, but.......just for the moment.
Have decided to take control of my life when all this is over, make some grown up decisions and plan a future that does not involve biding my time and worrying about my pension!!!
Just wanted to share this thought with all you Bunnies-and to let you know that however stressed, worried, sick, frightened or miserable you feel now, it does pass.
Philosophy lesson over!!!!
Love to all,
Good luck to everyone who's having chemo this week. My second Taxotere is due on Friday so that will be my weekend scuppered especially after I have Neulasta on Saturday.
Hope everyone doesn't suffer too much.
I wore my wig yesterday. It was so uncomfortable and my head was so itchy I couldn't wait to get it off again. Bought 2 small fleecy caps (children's size M/L) for £1.99 each in Mountain Warehouse. Put a Buff on on top of cap and left a little border round the front. Tucked the Buff in at the back. Superb! Most comfortable I had been all day. Can't see the wig being used much! Hope those of you choose to wear wigs have better success.
Hi Vanns sorry to hear you're back in the myxi gang! Am not on antibiotics myself as the wounds are not infected but the onc wants them to heal a bit more before starting chemo. Am nervous that will get to next week and they will put it off again with no real notice! Hope they don't. Natalie you might not be the last one to start at this rate!!
Can't sleep most nights at the moment either which is making me cross. Off to get a milky drink.
Just wanted to drop by and wish Pixie luck with her Portacath tomorrow. I never did receive your PM :-(. Thank you for posting another one of your conversations with your mother, I laugh so much when I read them.
Tash, I don't know how you remember everybody and what they are up to. I had a lovely birthday thank you and got a lovely bag which is very fit for chemo, lol.
Vanns, sorry to hear you are on antibiotics but at least they now know what is wrong. I hope your chemo can still go ahead on Wednesday. I shall be holding both yours and Pixies hands....I'm the last one (I think) and I am getting really nervous now. I also get the feeling that you all seem to be having the same drugs but I am having something completely different (6 x TAC) and I'm now worried that my SE's could be somewhat different and in a bad way 😞
Welcome to the new bunnies in the warren, I'm sure you will settle in quickly.
I hope everybody else is ok and glad to hear that Gadget girl is out of hospital now.
Good night and love to you all
I'm afraid I fall into the category of not remembering everyone's names when I'm writing a post. Well done Tash for managing a message to just about everyone. Chemo brain freeze has not affected you.
Anyway my update is that I'm rejoining the myxi bunny group. 😞
They sent away two swabs one of which grew nothing in a week whilst the other grew a regular type of bacteria after 5 days so I'm back on the antibiotics. However my wound is improving daily and my ONC has cleared me to start on Wednesday? Bit worried about this but I guess they know what they are doing. BCN has been checking the wound throughout but im sure this evening it's a little red again. This could be as today was the first time I have worn a bra since the infection or anothern ' in my mind illness' . Anyway I'm starting to get really nervous now as we are the later starters and have read fully what awaits us. Last day of relative freedom tomorrow.
Keep going everyone.
Good evening April bunnies,
Feeling better now the heart burn has been brought under control with the omeprazole. I suffered over several days with trapped wind it was very painful and is just settling down down.
Tracy / Sharon glad your both getting better after having a bit of a rough time with the SE's. Hope you get your meds sorted out for next time and send the SE's packing to a place far away.
Teabelly - Having an acute sense of smell too cooking smells has its advantages with not having to cook lol.
Good luck and hope all goes well Vanns starting chemo tomorrow.
Also good luck pixie to having your portacath fitted tomorrow and starting chemo on Wednesday.
Natalie - Happy birthday for today and good luck in starting chemo this week.
Sarah - Glad your feeling better after 10 days of nausea, sickness, constipation and the trots. I had constipation then the trots and it was controlled by taking Imodium. Also I believe that the red drug epirubicin is the nasty one that causes the sickness and the hair loss and makes your pee go red. I do not know why when you are told all about the SE's that Wiiiiinnd isn't mentioned as it is a common SE and there is quite a large thread on here all about it.
Hyzenthlay welcome to the bunny club and good luck in starting chemo tomorrow.
Gadget-gal - hope all is ok now after your visit to hospital and glad your back at home now.
Little chick - welcome to the thread and good luck startign chemo on wednesday the same day as Pixie.
Pixie - great comment about telling your cancer to FEC off!!
Sameelee3 - Sorry to hear the SE's got you a bit hard and hope your feeling better now.
Libby12 - I have got my 2nd FEC on the 4th May the day after you.
Day 11 and I haven't had any signs of hair starting to come out yet.
Hope all Bunnies are feeling fine and small SE's to all and good lkuck to all starting chemo this week.
Rep: am due for my first FEC on the 3rd May. So will be in it together xx and happy birthday Natalie xx
Hi Libby and Gadget-girl
I'm also next being dosed 3rd May
Can't bear to think about!
Hello to all the newbies and apologies for not remembering anyone's names. I too read the posts and by the time I get round to posting, have forgotten who said what! And I'm not even on my chemo treatment yet lol!!
Well, a busy weekend with lots happening here. Probably did too much and am a bit more tired than usual today, but it kept me from thinking too much about hats, wigs and hair lol!! No one at the chemo unit or the BCN has mentioned anything about wigs or vouchers or anything at all. There was a crappy looking printed page about a range of hats on the stand which looked like tea-cosies! Expect I'll get that chat the next time I'm there.
Pixie: Your mother is a national treasure! I laughed out loud (really) that the story about the lorry... please tell her that she's keeping us all going with our unmentionable body parts cancer! When my kids and I used the walk the dog round the block we used to go past a house that had lots of little things in there including a very freaky looking Panda. The dog always barked at "Freaky" and it became a running joke. Eventually the house was sold and the new owners removed the panda and the frogs and everything. The dog still walks past there and has a quick look see.
Talking of which, getting a new puppy will certainly keep you on your toes! I have 2 dogs of my own (and am a dog trainer too so any tips you need, let me know) a Bedlington Terrier called Bertie and a Bichon Frise called Bella. I was out on a social walk with some friends on Sunday and Bertie had a lovely swim in the pond and played with all the puppies. It was a wonderful sunny morning and I felt really tired but happy afterwards.
Have been back to work a couple of mornings plus been working from home too which I'm hoping that I will continue to do during my treatment going forward. It's been great to get back into the office and feel normal for a few hours.
Gadgetgirl sorry to hear you had to spend time in hospital - glad you're back home soon and okay. And well done for the "umbrage" over your details being shared. The poor lady with the enema will have felt just as embarrassed I expect. Sometimes doctors really don't believe that we can hear them when they are talking lol!!
Everyone else who's had the SEs this week, I salute you! You're all doing very well as Young Mr Grace from Are You Being Served would have said!!
There are a lot of Sara and Sarah names on here now. So much so that I read one post and thought I'd put it on in my sleep!! The good news is that I feel part of a very special group. I'm still in the Mixy Bunny group (back for a check up on Wednesday) and now I think we can safely introduce the S Club Bunnies too lol!!!
The menopause: am about half way through it already and loved the idea that everything just stops! I wish! Have had the hot flushes and the sweats and the mood swings for a few months now which hasn't been too helpful. Had a hysterectomy a few years ago and was on HRT which - of course - raised my chances of having BC. Oh dear and I thought it was going so well!
Sarah: Didn't you know that everything on TV is right..? I don't watch Eastenders (not since Tiffany died) so don't know if it's a compliment whether you could be Tanya or not! I'm sure you're going to be fab whatever!
Finally, I thought I'd share a bit of my story and if I'm repeating myself, apologies. Went to the GP after Christmas with a bit of a sore arm and what I thought was a lump in my right boob. She thought I should have a mammogram even though I'm only just in the age group and probably wouldn't have had one for a couple of years as there was no reason to suspect anything. The lump wasn't really big - more that I felt I had a swelling - but by the time I got to the hospital for my tests I thought it was mastitus and that they would tell me off for wasting their time.
WRONG!!! Having spent the whole morning having an examination, a mammogram and then being asked to have an ultra-sound, I was diagnosed with two patches of breast cancer in my LEFT boob. No lumps, no changes to my boob at all, just a couple of patches which made up around 4cms in total that needed a biopsy. By this time I'd had the news and thought I'd better call my OH to come to the hospital and be with me while I had the biopsy. He'd dropped me off as we both didn't think it would be much of a hassle. This all happened at the end of February. By end of March I'd had surgery to remove the 5cms of cancer and clearance and a boob reduction on the other side and was back home waiting for further treatment. A rollercoaster of a month mentally and physically.
I was told that initially I'd only need radiotherapy so to get the news that I was also going to need chemo was a bit of a shock. BUT I am so grateful to my GP and so incredibly lucky as it could have sat in my boob for months or even years before I found this and who knows what would have happened then. I definitely had a guardian angel looking over me.
Okay, that's it for now. Hopping off now for the rest of the evening and hugs and positive thoughts to everyone in the gang.
Emend is a trade name. Your chemo team may know it as acrepitant. Under the NICE guidelines you are entitled to this. However at £600 a time some chemo units are reluctant to prescribe it straight off.
It was offered to me straight away as had terrible morning sickness w hen pregnant.
Thanks for the best wishes everyone, I was discharged this morning during the ward round.
There was one bristly moment where a registrar brought round a group of students. She talked quite loudly about everyone's conditions. So I now know the lady who was opposite me has a liver problem but stopped drinking at Christmas and thus might be considered for a transplant; the lady next to me had a menningal virus and is a,ittle constipated, they were so kind to offer her an enema or suppositories loudly and clearly; so I suppose it was only fair that they got to hear that I had breast cancer and was admitted due to a risk of neutro-thingy-whatsit. I know they heard it too, because they lady next to me stared at me agog when I pulled the curtain back.
I did make my umbrage known.
The annoying this was, that wasnt even My doctor. It was the same guy who admitted me that came round later and discharged me! Glad to be home though.
Libby, I have my next FEC on 3rd May too. I had the cooling cap last time as well. My hair 'shed' a little more than normal last time I combed it, so I'm keeping it braided and hoping for the best. I really want to get back into the gym, I'll try and fit it in this week.
Hi all , been busy the last couple of days with decorating the hall, so have been keeping my mind off things. Margee gym session was really good and I am going to hopfully keep it up. Well its day thirteen, and I am now worrying as I have had no side effects, except tireness on the first and second day. I hope that this does not mean that the second fec will be worse or am I worrying for nothing. I had the cold cap and so far no hair loss, mind you hair felt a bit ichy today, but not sure if that because I am not washing or combing it much, well I live in hope. I have been reading all the comments and feel for all those who have been having a really bad time, I do think of you and send hugs. Pixie good luck this week with the portacath and first chemo I will be thinking of you. My next one is on the 3rd of May, is anyone else having one the same day. I note that some of you have been talking about Emend, I was given this without asking, and the nurse said it was fantastic at preventing nausea, so I hope those who did not get this,will be able to next time round. Tracy hope you are ok, how is the hair!!. Hugs to all Elainexxx
Just back from pre-chemo ass and subsequent visit to in laws. Nurse had never heard of "Emend" said it sounded like one of those quack therapies off "the Internet"!! Will ask onc about it on wed. convinced I'll be throwing up now 😞
Sara, my weird feeling turned into a pulling sensation last night and it's not nearly as bad today. I had a titanium marker put in and wondered whether that could be the cause, or maybe the tumour is just hitting a nerve or something.
I've got myself booked in for a massage before the chemo and should be meeting the wig man as well. Haven't done a thing about hats or wigs or scarves. I know I'm going to lose all my hair but just can't quite seem to face the reality of buying something! Ah well there's always a big hankie with knots tied at the corners if I'm desperate 🙂
Pixie, I know exactly what you mean. I keep thinking about people I knew who had cancer and what they must have been going through without people understanding.
Thankyou to everyone who is posting. It's good to know we're not alone and really helpful to hear of others' experiences. X
I have had my intro to the chemo unit this morning, it makes it seem even more real. Planned to clean the house this afternoon but have sat reading instead oops! Have chosen my chemo bag, a much loved fav purchased in Buenos Aires. Like Pixie it doesn't have much in it, think it will end up with a boook, I-pod & water. Tomorrow I go to choose wigs, yet another reality check & I will have to clean the house!
Good afternoon bunnies
Lovely to see so many bunny pics appearing. Those bunnies who are still a grey head, come on, get a bunny pic up there:)
Sameelee, what a dreadful time you had. I am so sorry, let's hope you get different anti-emetics next time. Have my first FEC Wednesday and hope I don't get bad sickness especially as our bathroom is on a different floor of the house than the bedroom.
Sarah12, I also experienced a sort of inward pulling where my tumour was yet I had never felt a lump. After wle, that went.
Sarah, fantastic news that you are feeling better. Doesn't matter how we get over the hurdles, as long as we do. If you ask your bcn, she will go through your pathology report with you. This can tell you stage, grade, hormone receptors, size, type of cancer and also HER2 status. If you want reliable information, this site is good, also McMillan and Cancer Research. I don' t look on others as there is a lot of iffy stuff out there.
Well, considering I live in the bit of the country that has a hosepipe ban, it hasn't stopped raining for 2 days and the forecast is grim all week. This wasn't in my game plan. Intended to recuperate in the conservatory with the sun streaming in. Am in there now and noise of rain on roof is deafening.
My chemo bag now has a carton of ginger and apple juice to keep the packet of tissues company but can't think of anything else. OH coming with me for first one, just in case I do a runner. I have to go for 2pm so there will be no waiting so they say. The thought of 22 cycles ahead of me does feel like a marathon so trying to focus on one cycle at a time. Like everyone else, I just hope by going through all this I can get shut of it for good.
I was very naive regarding bc before this, had no idea how insidious it was or how many women are effected.
Good Afternoon Bunnies
Welcome to all the new ladies although I sincerely wish you didnt have to be here.
I can honestly say I still feel good and have actually been working this morning. A collaegue said they were so pleased I had jumped over the first hurdle, I was really embarrassed and red as I said no I actually crawled and cried like a baby over it and I wouldnt wish this on my worst enemies.
Gadget girl I do hope your home soon- it must have been so scary when you noticed your hand but at least the hospital acted fast. Does everyone take their temperature regularly because I dont and am wondering if I should.
Tracy I hope you dont have to wait until day 11 but I promise it does go away and even if its for a few days I am really enjoying feeling normal again. Ate half a packet of chocholate biscuits this morning just because I could. Hoping i dont have to pay for it later!!
Oh no Sara no one told me about the menopause but I am so glad you told me periods get heavier cause mine is definitely and I admit I was worrying a little bit that maybe I'm heamorraging and dont even know it -oh well just wait and see what else my body is going to do.
The last few months have been such a blur for me to be honest I have basically just done what I have been told and not really questioned anything about my cancer now I'm reading everyones comments I feel I didnt ask enough questions of my Oncologist - if I'm really honest i tried to block out what was being said. But now I'm wondering what are active margins?
I had to have a second surgery after the first cause my margins werent clear? is that the same thing? Also I dont know how big my lumps were. All I know is I had a really tiny one which I felt 0.5mm but when they did a scan they found a massive one behind it deep down which I couldnt have felt cause it was too deep down but I dont know how big it was. However they definitely said my lungs were clear.
They didnt tell me a stage and I'm not sure what grade but they did say it was invasive and ER+.
I was told best to do chemo because theres a 25% of recurrance without but 17% with and therefore better to reduce risk as much as possible. I dont really understand it all and a bit frightened too as well.
Pixie good luck with the Portacath and your first FEC to cancer that is brilliant. I'm trying so hard not to think about the next one dont know if my bunny heart can take it!
Noticed my hairs falling out in the shower eeeekk! and the comment well you knew it was going to happen really doesnt help at all.
I think the most annoying comment I had was when I had my hair cut really short and my youngest sister said "you know your hair doesnt always fall out." I said "It will the Oncologists people told me it will, it definitely will" "are you sure" "yes I am absolutely sure" "well I was saying cause you know Tanya in Eastenders had it and her hair is still fine" " well did she have it in real life or on the programme" "Oh she had it on the programme but it was like proper cancer. You know im just saying its such a shame to chop it off, its sooo long and beautiful and silky and you might be like Tanya in Eastenders."
Unfortunately Im not Tanya in Eastenders and its falling out!
Love to all.
LittleChick - it's a bit annoying isn't it when the professionals don't believe you? I had a similar experience - I told my surgeon that I thought it was getting worse and there was more dimpling etc. She hardly glanced at me and was quite dismissive - 'oh you had that before' she said - 'you probably hadn't noticed it'.
Well, of course I would have noticed... I checked how things looked after I first felt the lump, and there was nothing visibly different from normal at that time. It doesn't help when the inference is that you are imagining things, does it?
I also had a sort of sharp 'pulling' sensation inside, which might be similar to what you described as 'pinching' - but that has gone now, thank goodness.
It's useful to know that someone else has had a similar experience!
Haven't been able to face looking at a screen for a few days but it's good to be back and catch up with all your news!
I had my FEC on Weds and stupidly came home, sat down and ate some supper. Truly horrific vomiting followed and a grim night during which I seriously doubted my resolve to get through this business. Sickness all night and all the next day, unable to keep down any water or food, so anti emetics are trying to work on an empty stomach and causing more sickness. Great! I was so desperate to be good and drink lots of water like everyone advises, but I just couldn't.
Lived on tiny sips of water and three oatcakes. By Sunday I was feeling a bit better though, eating and enjoying some food. Had lost 4lb in three days,and I pretty much stayed in bed the whole time. Was worse in the evenings, sometimes would get the shakes.
My sense of smell went berserk- the house seemed to smell horrible.... had to open all the doors and windows, clean all the sheets, etc. Told my OH that he needed to eat only raw food or salad for a while- he forgot and started cooking some onions to make soup. He honestly thought I was gagging in order to make a point!
Today is ok, so far, apart from waking up with a blinding headache. Seem to have a definite appetite, which is good, but my skin is awful too- acne-like spots that I should be well finished with at my age!
Am very envious of those of you living near a beach- no such luck here, but the Cotswolds will have to suffice. It's not the same as a stiff salty breeze though,is it?
Not much sleep last night, as finding it really hard to relax- my heart felt like it was beating too fast- trying to help my body rid itself of all the toxins. Need to some of this positive imaging, I think, as all I saw in my head was needles and drips, when what I want to be seeing is long sandy beaches or rolling hills and blue skies.
Welcome to LittleChick, Hyzenthlay and hope that Gadget Gal, you are doing okay if you are still in hospital. Good luck for the portocath,Pixie, and so glad that you are feeling better Repunzal after your hellish ten days.
Thanks all for being such a positive force, Bunnies, and for all the tips: you are a real tonic, especially to those of us who don't have family close by. Good luck to anyone who is suffering any of the FECing SE's at the moment, and am thinking of all of you who are having your first chemo this week.
Welcome to our latest arrivals, good luck to those starting out this week (including pixie for portacath fitting) .... and good luck too to those who are already starting their second cycle this week. Isn't it amazing how far we've come already.
gadget gal, hope you are feeling a whole load better. I've been warned that if there's any sign of infection it is straight in for intravenous antibiotics so wasn't surprised when you said that's what you've got. Hope you are allowed home soon (maybe there already).
Elaine, how did the gym session go?
I know there are other comments I'd intended to make to other people but unless you do it straight away it gets lost in the mists of time.
Well, it's 12 days since my feccing FEC1 and yesterday I noticed a few hairs came away quite easily when I ran my fingers through it. Today there are more coming away more freely than yesterday ... so I've been practising my scarf tying (learnt at Headstrong session) and have actually got my wig out of the box for the first time since buying it 10 days ago. I think whichever bunny it is that went commando at the weekend was great. I REALLY hope I feel OK about doing the same. Like others I've had an itchy head and have had a couple of sores on my scalp too which I rubbed E45 cream into. I bought some aloe vera shampoo and conditioner at the weekend, but it doesn't seem I'm going to be using it much - until it grows back when this treatment is done. Also bought aloe vera toothpaste which is good and aloe vera mouthwash - I can't stand Corsodyl - the smell makes me nauseous, let alone the taste of it in my mouth. Not tried the new stuff as yet as my mouth is fine at the mo - it was sore for a week after FEC1. Got milk thistle too - will ask my onc on Wednesda if he's happy for me to use it. Can't see any reason why not myself.
Wiiiiiind - yes! and hiccups. I found the thread about wind - some of the stories are very amusing. Oh and for the inevitable constipation I found good old fashioned syrup of figs (now called califig or something) worked!!!!
Love to bunnies everywhere.
Hi Sara, thanks for the welcome. I am similar, noticed a bit of reddening and pain is getting worse. BCN thought it was in my head I think (comment was something about how our mind plays tricks) but I have a weird pinching sensation when after the biopsies it was just achy. I have asthma and eczema too which has got worse with the stress. Onc said my hair might not grow back because of the eczema, but I am hopeful! Lost a fair bit years ago when my scalp was bad and I'm really not looking forward to wearing hats all the time again. Asked hubby this morning if he minded me just going around bald and he said "of course not". I'm babbling, sorry just nervous! Hubby has been great though.
It's good to know we're not alone. All those talking about diet - I am a veggie non-smoker with no family history of cancer at all. Wonder if they got me mixed up in the baby ward? Lol! X
LittleChick - welcome.
Having to wait a long time for diagnosis/treatment is nerve-wracking isn't it? I'm similar to you - 5cm invasive ductal with 'active margins', grade 3, and having chemo pre-op. Like you, my CT and bone scans were clear, thank goodness.
I wasn't looking forward to coping with chemo but was grateful to get started. Since original dx there were obvious changes in my breast - reddening, dimpling, soreness etc and the lump seemed to be getting larger, so I felt like I was inhabited by an alien spreading its tentacles! Am on first cycle of chemo and the soreness has definitely subsided, but don't know yet whether the lump has started shrinking.
Good luck for Wednesday.
Pixie - I liked the FEC off reference too!
Just saying hello. I've been lurking for a while and am due to start 6 cycles FEC-T on wednesday. Neo-adjuvant.
A little history, Hospital lost or didn't get my gp referral and I ended up waiting 7 weeks for my appointment, but since dx things have moved pretty quickly to get me started on chemo within a month. I'm in my 40s and have a 3.5cm invasive ductal with some unusual giant cells, but thankfully ct and bone scans are clear. My pre chemo assessment is this afternoon, MRI tomorrow and chemo starts we'd. They also mentioned heart scan but don't know when that'll be fitted in! Anyway, if you'll have me ill be an April bunny.
Pixie, I love the idea of telling my cancer to FEC off 🙂
well day 6 and stomach still feeling dodgy and as for wind its embarrising it comes when you least expect it and very loud and tuneful the delights of chemo im very tired today even those i slept all night
Pixie good luck this week with your Portacath and your chemo hope all goes well and you dont get these horrible side effects
Hyzenthlay welcome and hope all goes well with your chemo we are all here to get you through this
Gagget gal sorry your back in hospital hope you are home soon wish i could knit i always drop stiches and looks holey i prefer cross stitching
Sarah hope i havent got to wait till day 11 to feel better you have had it bad hope you can enjoy a few days side effect free
Good morning bunnies
Gadget-gal, sorry to hear you are back in hospital, hope you are soon on the up. Since I was dx on 31 Jan, I have never stopped knitting too. On mothers day, my 3adult sons came for lunch and I presented them each with a jumper I had knitted. Bless them, they sat through the whole of Sunday lunch swaddled up in these great big woollies. They looked like the Batchelors -and OH wearing his was Val Doonican - (showing my age now)
Sarah, pleased you are feeling better. It is the epirubicin, the red stuff, that causes the bad sickness so CMF should be easier for you. However, it's the Fleuraracil that causes the pungent wind, so that one is with you for the duration! As for worsening SEs, I believe it is a very individual thing but am aware the fatigue does worsen the further on we get as our bodies are having to work so hard to deal with all the toxics and to rebuild our white cells.
Rae, just knew my mother could give someone a bit of gratitude - giggles. How's the portacath now? Get mine tomorrow.
Hyzlath - welcome, lovely to have you in the warren.
Thanks to all those who have contributed regarding anti-emetics. As well as my 3 days of Emend, shall make sue I have plenty of other stuff as well. The potential nausea is the thing I dread most of all. Don't much fancy the smelly wind either - shall banish myself to the conservatory and close the patio doors into the house 🙂
Well, it's the big week for me at last. Portacath tomorrow then chemo number 1 on Wednesday afternoon. As my chemo nurse said, this treatment is to tell the cancer to FEC off.
Have a wonderful day bunnies
Sarah - you will still feel as tired and yukky on CMF but the up side to it is that your hair will start to grow back while you are on it. Sorry you're having so many problems with SEs. Hope you will have some good days soon.
I clipped my hair off yesterday. Scalp still a bit sensitive this morning but much better than before. Head is just itchy now. So now I have to decide if I wear my wig when I go out today or a scarf. If i wear my wig then will need to take a knitting needle with to scratch my head through it! And I have visions of my 7 month old grandson pulling it off! lol
Regards to all
I love your way with words. And your mum sounds hilarious. I am counting my blessings I don't have a lorry in my front room 🙂
Sarah - sorry to hear you're having such a hard time with SEs - hope everything has settled down now.
Re menopause - I guess the treatment must affect hormone levels in some way, but I expect everyone has a different reaction. If it's like a normal menopause, your periods won't necessarily just stop.... for some people they get lighter, for some heavier, for some more irregular - and that can go on for ages. Some people get hot flushes, others aren't affected much - so I guess it's a question of wait and see.
Hyzenthlay - welcome, and I hope all goes well on Tuesday. I was apprehensive the first time too, but the actual treatment really wasn't too bad. I'll be more prepared next time, as I'll know what to expect.
Gadget-gal - sorry to hear you're in hospital, that must have been a bit scary. Good to know that they treated you quickly to get everything under control. It might be a nuisance having to stay in, but better safe than sorry even if you're feeling fine now.
Hi everyone, yet again I'm making a post while in hospital.
So.. Yesterday mid-morning, I notice the cannula hand was little swollen and then vein was discoloured and raised. Given I'm the type of person with tiny invisible veins this was a little bit worrying. I called the out of hours no. and they advised me to go to A&E and have it checked, as there was nowhere else on a weekend. At that time, I started to feel illl too.
When I arrived at casualty and explained I was mid-chemo and feeling iill, they printed my notes and sent me straight to the resus/urgent area. There were already people waiting but I was called to a bay first, I did feel a teeny bit guilty about that. Once I was in a gown, they took obs and asked about symptoms. I was beginning to feel cold and shivery even though my hand was going back to normal(!)
After three doctors, three blood samples, they concluded that as I was on day 12, and my WBC could start falling, they would wait for blood results and give me antibiotics. Mum and I thought they were going to give me some pills and send me home. No, they gave me antibiotics by IV and sent me for a chest x-ray and moved me to a ward! So my next thought was "maybe I'll go tonight", which later changed to "maybe tomorrow".
I'm still here being of observed and medicated. They might send me home tomorrow after the ward round. Thankfully I have my knitting and iPad to watch movies. Lucky for me, those are the two things I never leave home without!
Hello everybody, I have been lurking in my rabbit hole but have come out to introduce myself. I was diagnosed on 20th Feb, mx and node clearance on 14th Mar and I start chemo on Tuesday, with a new patient appointment tomorrow. I am trying to get into the serious water drinking and sorting out the phone numbers. Nervous!
Hello Fellow Bunnies
Finally today day 11 I feel okay -the black cloud has finally lifted. What a journey!!
LOL Pixie your mum is a gem. Its her way of saying things could be so so much worse (although personnally i would prefer a lorry in the front of my house to cancer). But i thought about it and in my case the worse scenoria would have been what if I hadnt have discovered that tiny lump or worse still if I hadnt have bothered to report it to the doctor-it was so tiny smaller than a pea which I felt completely by accident because believe me I have never ever examined myself. And if it hadnt be for the fact that i happened to be going to the doctors for a smear test the next day that I even mentioned it in passing to the nurse who than examined it and I actually thought she was being too thorough and would be better of spending time with someone who was really ill. In fact I know I would have ignored it. I was so sure I didnt have cancer that I actually went to get my biopsy results on my own. It was only when the BN kept giving me strange looks in the waiting room and eventually asked if I had come with anyone that it dawned on me it was serious. So yes things could have been much much worse I could not have acted until it it was really too late!
Yesterday after ten days of sickness and nausea and constipation I literally spent all day on the toilet with diahroeah it was awful. After 8 hours of constantly going to the toilet I started worrying is this normal. I tried calling the ONC clinic to ask advise but it was closed and I didnt think it would be classed as an emergency to warrent me calling the On Call ONC person. So than I called NHS direct who wanted me to go into a walk in centre for a doctor to examine me. I said theres no way I'll be able to walk in anywhere since I'm sitting on the toilet every 5 minutes. Than a doctor spoke to me and said well if I didnt have a temperature theres nothing to worry about and I should just drink loads. I asked if there was something I could take to stop it because I feel really weak with running to the toilet and he said get something over the counter. OH eventually got some Imoden and that settled it down in the evening. Next time I'll just go straight to the chemist I think.
I cant bear to think about the next dose and am trying to just enjoy feeling normal again. Will it be like this again next time or will it be worse? I dont have any idea about this do SEs get worse each time? or is it different with each dose?
Cant remember who posted that the red medicine epirubicn is the culprit for causing the hair loss and sickness. I only have 4 doses of epirubicn and was wondering if side effects are much less potent when I do the CMF does anyone know? If thats the case it would make me feel so much better knowing I only have another 3 doses of this nasty poison.
My head is also sore and am now thinking about shaving off the rest of my hair.
The other thing is my ONC said that the chemo would push me into the menopause to be honest with everything going on I didnt really think too hard about what this entailed but for some reason I stupidly got it into my silly head that this means I wont have another period. So I threw all my sanitary stocks out after my last cylce thinking well thats the end of all that. However I was really shocked cause I came on yesterday regualar as clockwork, now Im wondering whats going on. Am I not going through the menopause or am I an unlucky individual who still has periods even though I'm menopausal. I'm just so confused about it. what does it mean push me into the menopause? whats going to happen to me?
Tracy like you I couldnt have got through this without my OH and my daughters and my mum and sisters they have been so patient with me and just quietly get on with it stepping in to sort things out and make me feel better. I just realise how lucky I am to have my family at this time. I know how hard it is for them to see me like this also.
Tash also I agree when they tell you about the SEs noone told me regarding the wiiiiiiind either. its one of the things that made me feel so sick and nauseas over the last 10 days. I feel so sorry for my OH because believe me there were many embarrassing times when I wanted to leave the room cause i was in it. LOL
I really hope and pray everyone is okay and feels really good. Have a great Sunday.
Love Sarah xx
Your mum is a scream. Mothers have this ability to put completely different perspective on things but I think your mum beats them all! Thanks for the laughs once again.
Well it looks like I'm going to have to get the clippers out.
Bettie - thanks too for advice. Seems a bit drastic but if it eases this horrible pain it will be worth it. I've got what feels like cradle cap all over my scalp too. Got my daughter to check and she says there's no flakiness. Maybe I'll be able to deal with that better too without my hair.
Hope everyone is coping with SEs. I just feel totally knackered all the time. Mind you looking after grandchildren takes it out of you.
Just love your mother!
In respect of having Emend, I had it at FEC2 after being very sick after FEC, it did stop the sickness in it's tracks but then on day 6 when I fully expected to be over it I was a little bit sick and terribly nauseous for a couple of days, so ended up back on the Metoclopramide but was ok as long as I took this.
Hope this helps.
Hi, I'm just popping over from the March thread.
My scalp was dead sore whilst my hair was shedding (2 weeks after my first chemo) I had my head shaved yesterday and have got instant relief. I have been out and about this morning commando and my head was freezing. You don't realise how cold it can get without hair!
Second chemo due on Weds, hope it will be easier than the first as I had a lot of nausea.
Best wishes to those having chemo this week.
Your mother's story cheered me up no end - but probably not for the reasons she thought it would!
About the sickness... I had intravenous anti-emetic, then I was given one pill to take 12 hrs after chemo, then 2 days' worth of steroid anti-sickness pills, and then a box of 30 domperidone to take 4-6 hourly as required. I was advised to take those anyway for the first 3 days whether I felt sick or not, and I did that as I hate feeling sick. I have more than half left though - nice to have them 'just in case'.
I only felt a bit queasy, and had no appetite for 4-5 days but felt better after that.
If they don't give you the domperidone and you feel sick after a couple of days then I'm sure you can phone your helpline to get some - no point suffering unnecessarily. With luck you won't feel sick at all - I'm crossing my fingers for you.
Hi pixie. Just a quickie reply about being sickie. I had intravenous anti sick and was told to take my tabs for 3-4 days irrespective of whether or not I felt sick, then to take 'as needed'. I started to feel queasy on the Friday and sat after Wed chemo and the queasiness lasted about a week. Perhaps without the tabs this would have become more- who knows, I wasn't hanging around to find out! And of course we know some poor bunnies have had heaps of sickness. Seems we are all different. When does your portacath go in?
Your mother is hilarious.
Good morning bunnies
Absolutely glorious morning in my bit of the country. Am sitting in the conservatory with the sun pouring in and feel very very glad to be alive.
Tracy, great to here you are almost human again. Sounds like your OH really stepped up to the mark.
Chris, have read that other ladies found that by clipping off their hair, it stopped the soreness, so go for it girl!
Elaine, I live quite near the seaside too and often walk for miles on the beaches with our dogs. However, it's a seasonal activity as round here they ban dogs on the beaches May to October. Makes me cross, I always clean up after our dogs which is more than can be said for many humans who leave all their rubbish behind!
Lots of bunnies yet to get their bunny pics uploaded, so come on, we want a thread full of bunny pics:)
We have 2 Jack Russell terriers, Max and Paddy who are one of the major joys of my life. They are now 3 years old and great fun and company. Anyway, we have decided that we would like to have another one so have applied to rescue a 9 month old bitch called Tilly. They are coming to do a home inspection this week so do hope they don't find me heaving in the bathroom.
I was wide awake at 3.30am so could have kept you company Tracy. Soon as I awoke, my head was off with veins and chemo. Veins because of the portacath procedure. I have this visual, like those medieval paintings of hanging drawing and quartering, you know where all the intestines are falling out. I imagine I will be laid there with yards of veins falling out and they can't quite fit them all back in. OH says I need help. Humph, it's not his veins they are poking about with.
I haven't been told to bring anything with me on Wednesday, so the £220 chemo bag still has a solitary packet of tissues in it, though I have got a notebook to write down any instructions.
A question to those who have started, I know I will be given Emend intravenously before the chemo and then tablets for the first 2 days at home. Does this mean the sickness only happens in the first 3 days? What if we are sick on day 4?
Mother rang this morning:
M: can you remember that woman who used to walk past our house in that purple mac?
M: yes you can, her husband had a trilby
Me: no, don't know who you mean
M: they lived in that house with Snow White and the 7 dwarves in the front garden and a rabbit pushing a wheelbarrow, you used to go wave to them when you were little
Me: who, the woman in the purple mac and her husband?
M: no! Snow white and the dwarves, and the rabbit, you used to stop and wave to them. The rabbit only had one ear.
Me: oh, yeah, can remember the dwarves. They had toadstools as well.
M: well they haven't now.
Me: what, they got rid of them?
M: they got rid of more than Snow White and her pals, yesterday morning a lorry smashed into their house, straight through the front garden and into the front wall of the house. Great big crack over the front room window and the door caved in.
Me: goodness, was anybody hurt?
M: no, but they only had their uvpc's put in last October and she got all new curtains
Me: well I expect they are insured.
M: that may be. Anyway, I'm telling you to cheer you up.
Me: cheer me up? How does that work then?
Me: we'll you haven't had a lorry come through your front wall have you so think about that when you are having your injections, at least you haven't got all that muck to clean up.
My mother has the ability to give absolutely everything a new perspective. So all you bunnies, feeling ukky with SEs, just be grateful, you haven't got a lorry in your front room. Shame about Snow White though.... Though Grumpy always had a real air of malevolence and I long suspected him as being the one who had the bunnies ear!
Have a wonderful day bunnies.
Thanks for your reply. I've been thinking of getting the clippers out as my scalp is painful even if I touch my hair. I had it cut short a couple of weeks ago so there's not too much left to come out but I'm trying to hold on as long as possible before I resort to the wig. Having been through this before I know how uncomfortable and warm they can be.
Hi Teabelly i sitting here too with toast and a shurning tum...i was advised to take another half of lorazapan...then in an hour if that doesnt work..paracetomel...my temp is up at 37.3 yet was advised to take the painkillers...in my leaflets its says not to...as it may mask anything else...
Im back feeling human again but now i cant sleep its 3.15 oh dear but at least my stomach has stop doing somersaults and now im hungary sat eating a slice of toast.
i seemed to missed alot whilst not being in the land of living
Elaine glad you had a nice walk yesterday i went for a little walk yesterday felt like a little old lady had not energy no make up bet i scared people but did feel a bit better afterwards
Pixie im hoping not to go through this next time 4 days of hell i couldnt lay still my stomach hurt that much. Your fund raising event sounds brillant
Natalie hope you having a good birthday weekend its sounds like your really busy
Tash my sense of smell has gone really funny i cant believe the simple things that are making me want to be sick its good way of getting out of cooking tea those
Just want to say i dont know how i would have got through last few days without my oh he has been brillant ive never been good at being sick i cried out for him everytime like a little kid when its coming both ways its not the prettiest sight but he just got on with and made me feel better
I never had a sore scalp, but I know lots of people who have reported it as an SE. I think some people decided at that point to get the clippers out.
Sorry, can't help much with that one - just that you aren't alone or weird!
I'm on day 17 after Taxotere. My hair is starting to thin quite a bit but for the last week my scalp has been really sore especially in the mornings on waking. Has anyone else experienced this?
Hi Bunnies, Pixie its so good to hear positive stories about people surviving breast cancer, sometimes we forget that loads do and live long and happy lives. But I also think we do have to help ourselves and look after our diets etc. It also sounds like its going to be a fantastic fund raising event day, wish I lived nearer so I could join in.
It was a lovely suny day today so I went on a three mile walk along the beach listening to my favorite songs, it really picked me up and I now feel shattered so hopefully will sleep really well tonight. Tracy so sorry you are still not feeling to good, please make sure you look after yourself. well love to all Elainexx
Good afternoon bunnies
Tracy -pleased to hear you are a little better, let's hope this never happens again and that you get the meds you need beforehand next time.
Natalie - I did get the pm and sent a reply. Didn't you get it? Be great fun at the LGFB day - don't forget your ears. Have a wonderful birthday week.
Tash - glad you are on the up again after a bumpy few days.
Gadget gal - hope difflam helps and the soreness abates
Have been to a cancer research fund raiser today organised by my husbands cancer relay team. Held in village hall, cake stall, raffles and other bits and raised over £1000. The actual event on 14July is set to raise £30,000. It's a 24hour walk, the first lap and final lap is done by survivors only. So that's me! The walk itself is on a running track and for the whole time, there are live bands, food tents etc. people go and camp. We will take our caravan down, which means I can go rest if struggling with chemo fatigue.
At the event today, a lady came up to me and told me she had breast cancer and is now 7 years clear. Made me feel encouraged and that this is something to be got through.
I feel really well right now, doing all my usual stuff so it is an odd thought to know that after Wednesday I am likely to be floored:)
I am with Elaine and highly recommend The Rainbow Diet or variants of it. Since being diagnosed, I have changed my diet significantly in the hope of 1) lessening the S/Es and 2) doing all I can to support my medical treatment from a nutrition perspective, 3) doing what i can to hopefully never have to deal with this again. It has had a nice side effect of me dropping a dress size as well.
Anyhow, that's me for today.
Well what a few days and can still say i dont feel right stomach all over place hope everyone else doing alright
lots of love Tracy xx
Good Morning Bunnies
I hope that you are all well and are going to be able to enjoy the weekend without any SE's. So sorry to hear that Tracy and Sharon have had such a bad time after their chemo this week, hope you are both feeling much more human now.
Well less than a week to go now until D day for me and I am ok at the moment but just know that the closer I get, the more nervous I will be. I am at the hospital on Tuesday for a pre chemo chat/bloods etc with the head nurse on the oncology ward and also a consultation with the cardiac specialist, I am assuming this is for the echo cardiogram that want me to have. It is all go once again.....such a busy social life we lead, lol.
This is officially my birthday weekend/week (big 3-0 on Monday but don't tell everybody, lol) and I intend to enjoy it to the max. Cinema with hubby tonight, shopping tomorrow and dinner with friends, family meal on Monday and then it continues throughout the week with other meals out with friends, I am going to be very fat by the time chemo day arrives, is that bad?
Pixie, your hair cut sounds great by the way. Did you get my message re the LGFB workshop, looks like I will be joining you in June after all...god help them, lol.
Elaine, I shall check the cancer active website out, is the diet easy to follow?
Vanns, so pleased to hear that there is no infection and you can go ahead with chemo on Tuesday. You join both Pixie and myself this week.
I am sorry if I have missed anybody out, hard to keep up with all the posts the last couple of days.
Be kind to yourselves and enjoy the weekend.
Love to you all