Well done Nic, you’ve started so that’s one less to do again.
Hope the symptoms settle down too, are you writting down what you’re getting and when. I would, because you can talk through the side effects and they may be able to adjust/change the drugs that deal with the side effects for you next time.
I’m thinking of the first one as a trial run to find out what’s needed to make the rest of the easier.
Lots of love and rest well (may I recommend some kids movies or meditation cd’s if you cant. A good friend sleeps with radio4 burbling under her pillow quietly, she says it’s meditation to her)
Hi everyone, how are you?
Woolly - I cannot believe your story, I would have been desperate. They tried to send me home but I just couldn’t face not going back without one completed. Psychological thing isn’t it? Well done for getting it done and now you get the bad bit for all your hard work. What a way to live eh. I hope you do not struggle too much with this part. I am a big slug today, no energy and feel like I am in a bubble. Hope to be more of anything tomorrow,
Lily x
Take it easy right now. I was told it’s between days 7 and 10 that you’re actually at your weakest. I figure your immune system probably doesn’t plummet that suddenly so it’s probably telling you that it needs some tenderness right now.
Hope you find something relaxing and distracting to do. I know I keep telling everyone to watch comedy but I’ve heard several mentions on here that it’s good for your immune system to have a good old laugh. That and old fashioned chicken soup, which I was stunned to find out has scientific basis behind it because the chicken gives up L-lysine and L-arginine.
So if it appeals eat lots, I can give some simple recipes that are easy to adjust to what ever tastes you like if anyone wants, so fortunate that my mum taught me to cook properly. I already have a stock (literally) in the freezer ready for the weaker days.
So hope your relax well while you wait for the better days to come back.
Hiya All
Im back home but its wierd all this chemo bits. I felt bit sicky and headachy, someone asked me a question today and I couldnt answer as felt spaced out. I’ve had really bad back pain which seems to have spread round my front which meant wandering my house at 6am still. Hoping its a side effect? anyone else had this? Could also be that started my period the morning of chem and it stopping it the same day?!? Might be moving upwards too which could be a bit of indegestion but all just a bit scary and its damn hard staying postivie when you feel crap, but it could be worse and could have even more side effects. Pity the “Domperinone” tablets werent the really bubbly stuff!!!
On a plus point its nice today and went to a family BBQ and felt normal (well for me!!) for a few hours! Hoping that effects wear off soon - 4 days in and couple of stray hairs, when does it come otu big style I wonder as that’s when I’ll feel different!
Hope everyone okayish and eating whatever they feel like! I might turn into a gingernut or pinnapple soon!!
Anyone gone off any food? I havetn been too bad but was craving alpen and milk and one whiff and mouthfull of the milk and I was off! Plus mate very kindly bought me some maunka honey, gagg everytime I try and take it but supposed to be good for you.
Some people find the manuka way too sweet. I know people who mix it into drinks instead if that helps. You don’t have to eat it neat that’s for sure.
In some strange way I wish I was ahead of you so I could offer some point of view about what you’re feeling but I can’t.
I can say I’ve heard of people who thought they were having a heart attack being told in A&E that it’s heartburn, ie acid reflux/indigestion and they weren’t even on chemo so not as paranoid as we’ll be.
So who knows… if in doubt ask but try not to imagine anything sinister.
Anyway I must stop and watch a movie before a long day travelling to yorkshire tomorrow and heart scan on Tue.
My name is Kirsty and i have just joined as a newby and love to get advice from others. I was diagnosed with breast cancer in February. Two weeks ago i started my first cycle of chemotherapy. I have been reading some of the forums and already got some great advise on mouth uclers and what to use - they really hurt!!
Everything i eat really taste wierd, a bit like metal. Does anyone else have this?
Hi Kirsty, I have a strange metal taste as well, I have had had 2 lots of chemo, and its no worse this time if that heps any!. I cant face any hot drinks at all, most disturbing i cant stand the taste of red wine!!! that was the thing that was going to keep me sane! pineapple juice is good for your mouth because it coats it somehow, i drink through a straw and let my food cool down before i eat it. Dont suffer with mouth ulcers go to the chemist and get advise, my mouth just feels as if i have burned it so prob not as bad as yours. sorry i couldnt give better advise… will be thinking of you. take care
jo xx
Good Afternoon Ladies,
Haven’t been able to post for the past couple of days as i’ve felt cr@p!! Head feels like it wants to explode…Feel drunkish!!..Eyes sore and can’t stand to look at the computer screen…Otherwise not too bad! Always feeling hungry, blah blah blah… Hating it already and only one down!
Finding it harder as my babies are soo tiny i guess, need constant attention from me and i can’t give it
Going to discuss the 2nd lot with my onc as i can’t be feeling like this all the time, i can’t even see straight…Anyone else get this???
Oh well, hope everyone else is well…What a poor bank holiday.x.x.x.x
Thanks Jo for the tips. I will definately start trying to use straws, anything to ease the ulcers. I have also gone off some food and drinks. I’m usually a big coffee lover, but can’t stand the taste at the moment.
Another thing that i am doing is not thinking straight! Went shopping today and when i got back i put the washing powder in the fridge without thinking!! I was only aware that i had done it, is when my husband started laughing
Anybody else done any strange and wonderful things?
Hi Lolly
Soz you feeling so crap - its hard going already isnt it. Hopefully things will pick up! I’ver had a bit of the drunkish feeling too!! Headache but my pain is back and stomach and bludy scars feel tight and stuff too - think everything is just exagerated!
Hi Kirsty
Ive gone off a few things too, the pinnapple definately works and Ive been drinking pinnapple juice with lemonade and topping up with ice to try and get rid of the horrid taste in mouth. If you struggling with ulcers aparrently you can get something from the hospital where you are treated that is a paste that you mix up - supposed to work well.
Hope everyone feels bit better soon - off now as brain isnt in my head I dont think
x
Hi everyone. Greetings friends in hell!! Have fun those of you who are not just now.
Lisa, Lolly I am so with you on this, have not been able to post much unless I look away from screen and even then it takes its toll on my head. I understand totally what you mean,yesterday I was ready to give in and take my chances too, after just one dose!! How pathetic I feel for even saying that out loud when others here are coping with so much. Today I feel 80 % so a big jump up and I think it was the epi was playing with my head. My gums feel like I ate 200 degree pizza and skinned them all, had to phone the emergency number pager as got a sore throat. I was directed to the mouthwash (no one said when I should start it) and it is disintegrating the oily /creamy sensation that seems to be in my mouth, am I eating my gums. I don’t like this part at all but the tummy is strong and the head is clear so it was a bit of a fair trade today. Lolly I could not do this if my 4 babies were still little, I take my hat off to you. I am being self indulgent and finding some days seem to just go on and on, yesterday I was moody, miserable and the day was definitely 124 hours not 24. I am trying to stay steady because I have really had a lot of fine days and mostly manageable ones too and I don’t want to scare others but it is part of this processs to need to scream every now and again. I can recognise what I am feeling in others I have spoken to and guess the hype increases each time. Lisa my appetitie is up and down and what I can eat changes every hour. Cannot go near milk but managed blueberries in melted ice cream earlier? Mouth tastes like a parrots cage but not really metal, I reckon I could kill someone with one breath!! Who shall I get?
I must end on a cheery note as this is note one of my positive postings (vertangie please keep sending the sweet thoughts they are soothing us). Last night my son and his friend had midnight chips, etc and then went down to watch a movie. Our little dog broke in and ate every chip and box in sight and we found him this morning flat out on the bed unable to move with the fattest tummy ever, absolutely popping and 4 little brown legs sticking out. He is ok but I have really enjoyed someone else wandering around suffering and I had him clipped too so he has short hair for the summer and looks like my own little fat chemo buddy.
Thinking of you guys. There’s always tomorrow and hope it is a good one
Hugs
Lily x
hi lily200
oh dear you poor thing. somedays you just have to let it out dont you, before all this i never really grumbled (gave it up a few years ago when i discovered nobody listens anyway) but i had a few days when i felt low, my hubbys not exactly a good nurse, and when im sick(which i was for about 5 days after chemo) i asked him to give me a hug, but you would have thought i had the plague he wouldnt come near.
so we had a discussion (well argument really) and i told him i felt neglected because he was just carrying on as if nothing was wrong. He is not really behaving any different than normal, but when we are well we can cope. anyway im over them bad days so we are getting on again.
but chemo is coming up and if i need some tlcare i will go and stay with my sister. sometimes we just have to put ourselves first.
im lucky that im not really getting the metal taste. my oncologist also told me to brush my teeth after every meal, and use a mouthwash every time as well. and i did that and only got a few ulcers. so maybe it worked.
ive also gone off tea, but its hard to fit it in anyway with all the water they want us to drink.
take care and hopefully well get used to the treatment
Hi
everyday, sorry I went into epimania again. It was the nurse telling me I was just about to hit my worst 3 days, when I was feeling half an inch off the floor that did it. She could be wrong? I feel really well tonight. Got my hubby doing a bit more for me which helped too. He hates illness yup me too. Feeling chirpy now, long may it last.
How are you all, Lolly, Lisa, everyone else, let us know ? Hope things are starting to settle as we hit our low immune bit.
Lily x
The had enough comes to us all - wierd what a difference a day can make - had a nice one today at a caravan with friend and her family and forgot all about me for a while (hits hard when comes back) but nice to be normal for a while!!
Everyday - you poor thing not getting a hug - Im widowed and since chemo started all Ive wanted is a really big hug - wierd eh! Hope you stay with your sis if you need too x
Lily - no what you mean about the breathe feel like dont wanna talk to someone just in case - defo do the mouth wash though - touch wood no ulcurs yet but mouth and teath aching!! Hope your dog recovers soon too bless him, mine’s flat out on the sofa!
There was I coping well after the first few days when what happens but I get an insect bite! The past few years I have reacted quite badly, goodness knows why as I didn’t use to. So I was sure it would happen this time. Phoned Chemo ward and, yes, go to GPs. Been on massive dose of strong antibiotics ever since! 40 tablets in 5 days, I really think I’d rattle if shaken. This of course has meant me feeling nauseous and generally yuk on what should have been my ‘good’ weekend and has reminded me what it will be like in a few days time if my 2nd FEC goes ahead. I’m going to check with the ward again today to see if this will affect anything and the only up side if I have to wait a week is at least I’ll feel well again for a while - and I’ll be on track with you lovely ladies treatment wise
I’ve also had the metallic taste but not too bad, especially the further away from the treatment time and glad to say that wine is still tasting good! I also went off tea for 5-7 days but luckily have enjoyed a good cuppa since then and prefer it to all the water (which I have gone off a bit) and/or juice/cordials to keep my fluid levels up. Have gone off cereal and milk in general since 1st chemo but strawberries and cream are still tasting good! I’ve been lucky with my mouth but all of this has forced me to stop ‘nibbling’ the inside of my mouth, so one positive I suppose.
My sense of smell has gone back to normal after about a week of being hyper which was awful, I could smell garlic a mile away, plus anyone who’d eaten it which was worse!
I’m keeping an eye on the hair as I am now losing a bit (had cold cap for 1st FEC) which I think is still to be expected but my hair feels weird, like it’s sat on top of my head like a wig, so I’m not expecting it to last.
Hope everyone is recovering and at least we can have a moan to each other about what this is all like. It is good to know you’re not the only one dealing with this especially when all your other friends, sympathetic as they are, have no idea.
Hi everyone, feeling normal today, what a relief, just needed a little break from it. Hope you are ok
Nic, I cannot believe how such little things can send us into chaos. I really feel sorry for you as I hat tablets and taking tablets now is 300 times worse. has the bite started to respond. We would be ‘glad’ to have you on our week although we would have to find someone else as good as you at patting us on the back. I miss your sanity, hey we could all be mad and miserable together!!
I would describe the taste in my mouth as the poo in the bottom of an old bird cage and I still have this oily/slimy sensation but the mouthwash is good. I water it down and can use it more often then without wanting to heave. I have not had strong smell sensations with epi and I am going round with grot hair after reading about someone on here who has kept their hair. I am using baby shampoo and only washing it twice a week and one comb a day. I look terrible but I wasn’t going out so might as well give it a try. Not looking forward to the cold cap again. Did you feel like you had to go through an initial pain barrier and then it settled? The last 2 hours I only noticed the chin strap being annoyingly tight, with no sensation of cold at all really.
When is your next date, I have lost track, sorry. When I page back it eats my message and then the broadband connection keeps going.
Hugs
Lil x
Luckily the bite is responding and, after speaking to the ward, have been advised to still have blood taken (tomorrow) and report for ‘duty’ on Thurs. Will see then what the counts are.
At the time I felt the cold cap wasn’t too cold but the chin strap really annoyed me as I couldn’t eat much and my treatment was over lunchtime and beyond. During my 5 worse days I convinced myself I wouldn’t do it again but after I decided to go back to treating my hair as normal in a ‘what the hell’ attitude I started getting compliments about how I looked! Just can’t win with this one! Anyway my hair was hanging on completely until this weekend when quite a lot has come out but only strands at a time rather than chunks. Having said that my hair is really thick so even if I lost half of it (hopefully not in one place LOL) it would look OK. But I think my hair is now looking awful again so I’m still in 2 minds whether to cold cap or not again. Maybe my mind will be made up for me when I wake up, sit up and leave my whole head of hair on my pillow! I did have a headache after treatment but don’t know whether this was just from the cold or from the poisons!
I also hate taking tablets and already take ones for high blood pressure which I’m sure was brought on by my 1st lot of treatment when I was 1st dx in 2003. I took so many anti sickness ones after the 1st FEC that I forgot to take the High BP ones for 2 days - oops! I also try and take some herbal remedies for my immune system but these also had to give as I’d be there all night swallowing different tablets and never get to bed.
Glad you’re feeling normal today, it really affects us all differently doesn’t it? I had a splitting headache about 5-7 days after treatment which I hadn’t expected. My mouth feels OK as well - it’s just other people’s breath that does me in! Also I’m glad when I wasn’t going out and about during the 1st few days as my sense of smell made everyone smell like the great unwashed!
Well, I’m not feeling so bad with the antibiotics today and finish them tomorrow, just in time to feel bad again on chemo! I had gone back to work last week, mornings only, but have stayed off today as the girl who sits near me has caught a cold over the weekend and I’m not risking catching it as well. We’ll see what happens on Thurs and if all goes ahead as planned I can still keep on track to get this all over with by the end of the summer - what summer?
Take care and hope you have a good few days now, will keep in touch.
Normally cheery me had a bit of a wobble earlier… I’m thinking it was connected to being on the phone to the chemo nurse who’s booked me in for Monday 11am.
Me, chemo… waaah. This is starting to feel a little too real now.
On the plus side the echocardiogram indicated that I do have a heart and it does beat.
Nicky - Hope thursday goes smoothly and that your bloods are unbelievably good.
Everyone else - Hope you’re all as well as can be expected and having some good days.
