Hi all
Louisa - I remember Much wenlock - there’s a fire station there ! I haven’t been back to Shropshire for ages - despite the fact that my dad and bro and sis are there. I really should get back and visit tut.
Just a quickie to say good luck to all those having chemo this week - had bloods done yesterday, no phone call from hossie so assume all is well for chemo tomorrow.
take care
Margaret x
Well thats the 3rd of 4 out of the way - feel a bit nauseous tonight, and sooooo tired, but that’s been the norm so far.
Got to chemo unit for 12.30 appt - they didn’t put saline drip in till 1.10 - didn’t start my chemo injections till 1.30 and then informed me they thought one of them was wrong and had to be sent back to pharmacy to be checked - so had to wait a further half hour after initial treatment for last bit (which was wrong - pharmacy had given me 1 + 1/2 times the correct dose so had to be reduced - good job the chemo nurse was on the ball !!)
Nurse that put the cannula in said the veins on the right side of my left wrist were ‘gone’ - I asked where they’d gone - she said it’ll be because they’ve been used too much. Then I told her they hadn’t ever used that vein, so far they have used the middle of my hand and the vein on the left of my wrist - that left her a bit perplexed lol - maybe I never had any there anyway lol !! Mind you, she then used the same vein they used last time - and boy did it hurt !!
Jackie - it’s more a case that we used to be quite local to each other - we are all far apart now lol - hope you managed to get out on your shopping spree!!
Inurdreams - sorry to hear your fec was postponed - hope you manage to shake off the infection and get it sorted. Know just what you mean about hubby lol - I have so little patience with anyone else in my household who is ill now - they all mooch about like it’s the end of the world, sniffling and snuffling and I’m like…AND???
Cally - hope you’ve managed to get all the coughs under control now
Lousia - last time I went back to Wem - which was some time ago - there was ermmmm nothing going on never mind a gig lol - most of the shops had vanished and even the pubs I remember had changed soooooo much lol …or maybe I’m just older hmmmmmmmmmmm
Lorna - hope all went well today - was thinking of you. Re your comment about periods, that is one thing I am dreading, Prior to diagnosis I was on the depo provera contraceptive injection - and have been for 20 years !!! As a result I haven’t had a period in I don’t know how long - certainly 10 years, prior to having youngest daughter - obviously I cannot continue with the injections now - the last one ran out in early december - I am so hoping that it takes ages for periods to return - I don’t think I could cope now lol - at last checkup I was classed as ‘pearly-menopausal’ (a lovely term lol) which means I’m close but not there yet - hoping treatment sends me racing through the menopause before periods return haha
Hope every one else is well - take care & keep warm
Margaret xx
Hello ladies
Glad to hear most of you are up and well and dealing with things as best we can. I managed to get my third FEC yesterday as my bloods had recovered on Tuesday. Feeling alright today although struggling with hot flushes and bad headache which is something I have had before - keeping up with all the drugs and anti-sickness drugs.
Have made a call today for someone to come to the house for a wig consultation, still haven’t made up my mind whether to have one or not - still just using the scarves and hats, scarves are a preference as they make me feel safe and secure.
My periods have also been a little strange - rather sketchy at times and then full-blown, so much for periods stopping - no such luck.
Anyway washing machine repair man is due now - oh the excitment of my life at the moment is just incredible
Have a good day ladies, speak to you later
Jackie xxxxxxxxxxxxxxxxxxxxx
Hello everyone,
Glad to get that 3rd FEC out of the way. Treatment went fine but I had a bit of a yukky night. I suppose I must have been lucky with the first two. I wasn’t sick but with the first two I managed to sleep from about 11pm to around 5am. No such luck last night. I was just awake feeling sick and munching on rice cakes and digestive biscuits.
It didn’t help that the really heavy period waited again to coincide with the treatment.
I feel a bit more human this morning.
Margaret - glad it went OKish. It’s horrible having to wait isn’t it. You just want to get in and out. I was seen at 3.30pm for a 3pm appointment so wasn’t too bad. Doesn’t sound like there’s much chance of a period for you hopefully. If you do get one though I would just say don’t be alarmed if it’s a heavy one as that seems to be quite normal (although it is the last thing you need when you feel rubbish anyway.)
Jackie - good that you managed to get the 3rd one out of the way as well.
I am having my 4th FEC at 10.30 in the morning. I’ve had all the others at 2pm and 3pm. I was thining that the morning would be better as hopefully the really bad sicky feelings will have passed by bedtime. What does everyone else think in their experience?
Inurdreamz - hope all is well for your FEC on Friday. Is that right?
Hope everyone continues to recover well.
Love Lorna X
Just a question, has anyone had really bad night time sweats . After my last fec I was literally changing tops 3 times a night. My chemo nurse puts it down to hormones. its pretty yukky but I suppose I’ve got the menopause to look forward to and that’ll be more of the same no doubt
?
Hi everyone
thanks for keeping my spirits up
cally
I often wake up soaking wet in the middle of the night (didnt before chemo, done 3of 6) I now sleep with a towel wrapped round my pillow so I dont wake up cold & wet, forgot to ask before last one will try to remember to ask onc next week ( if I can find the list of questions that I’ve put down someware)
jj
Hi All,
Cally - yes, do find get sort of hot flushes during night, am still wearing summer pj’s and have to wear something on my head or else pillow feels damp when I turn over - nice!
Have been on other threads just looking around and the question of soya milk was on one - does it interfere with Tamoxifen because it contains some type of oestrogen. Don’t know, but was advised to use rice milk or oat milk instead of soya so just thought I’d mention it in case anyone is cutting down or cutting out dairy - rice milk and oat milk are both good for hot drinks and cooking and both taste better than soya (I think!).
How are everyones eyelashes and eyebrows doing? Mine are very thin now, I think I have about a quarter of the amount of eyebrows and eyelashes that I had before and what I do have seem to be really much longer than before which is okay for my lashes but my eyebrows look really messy. Have started to fill my eyebrows in with a brush and dark brown powder which looks okay. Haven’t tried my false eyelashes yet, they look too fiddley.
Day 15 of cycle today so went sale shopping to cheer myself up. Came back with three polo neck sweaters in various shades of grey, bit boring but think they look good with scarves, don’t get big expanse of bare neck at the back.
I had bit of problem with cannula last treatment too, nurse said one vein wasn’t working so had a prod around and had to use different one, but to be honest I still think that some nurses are just better at cannulas than others, my usual nurse is best, never hurts and no problems - she uses a paediatric cannula which is very fine (she is an angel!!!)
Hope everyone has had a good day and is feeling well, take care all,
love Louisa xxx
Hi Ladies
Cally - yes I also have terrible night time sweats - woke up about four times last night absolutely wringing wet, its a vert attractive side effect.
Viv - I have also had my FEc cancelled/postponed twice due to low blood counts - have had my third session this week and they have reduced my dose to try and esnure that I can keep to the three week cycle. They have assured me that there is a leigh way in reducing the dosage
Hope you all have a good evening, anyone doing anything nice ?
Jackie xxxxxxxxxxxxxxxxxxxxxx
Hi all
Well we all seem to have got by this weeks treatments (and good luck for tomorrow Viv x)
Lorna - I am the same with the sleep thing - the first couple of days I find I can doze on and off through the day but come night time I’m wide awake (maybe its the steroids in the anti-sickness pills?). Last night I never went to bed at all - was wide awake till 3.30 am then climbed on the sofa for 3 hours sleep before getting up for school run. While sitting awake I managed to eat 2 packets of crisps, a crunchie, a bag of jelly tots and 2 bananas !!! I’m absolutely sure that that is something to do with the steroids !!
Cally - I get the bad night sweats too - usually a few days after chemo - so much so that I keep a pile of spare tops at the end of the end of the bed for when I wake up soaking! Haven’t mentioned it to nurses - might do next time
Louisa - I still have eyelashes and eyebrows - eyebrows are thinning a bit, but my eyelashes are thicker and longer than they have ever been! I’m finding it quite strange actually - in some areas I seem to be working in reverse - I have never in my life had to shave/wax my legs, have never had any hairs there - yet now they are sprouting all over the place! Also, my hair on my head actually appears to be growing at the moment (we’re only talking millimetres here but hey!).
Jackie - I got my NHS wig just prior to my first fec - hated the flipping thing (even though I chose it and said it was okay at the time). I have never worn it yet and have in fact just donated it to the Wigbank in Ednburgh - and swapped it for one of theirs! Have no intention of wearing that one either lol but need one for when my daughter gets married in July (will have just finished Tax then so will have no hair again then ). I wear buffs mostly if I’m out shopping - if I’m in a cafe/restaurant/pub, or at home, I don’t wear anything - just go commando lol
The worst side effect I have had so far with the Fec has appeared today - I have NEVER had so much wind - from all areas!! It is extremely embarrassing ! Anyone else found this??
Despite feeling crap all day - I have managed to bake a blackberry and apple pie - and ate it (though it tasted quite strange - think yukky mouth also kicking in now), also made my youngest daughter a great big batch of chocolate crispie cakes and made hubby a huge sponge cake! And tomorrow I have to look forward to a whole day of completing tax returns for me, hubby and oldest daughter - yukkkkkkkk.
Oh and I must tell you about the latest chemo brain incident. My hubby bought me a smoothie maker for xmas - so today I though I’d try it out. Chopped up bananas, strawberries, blackburrant, juiced and zested a lemon, added a bit of orange juice and whizzed it all up. Poured a bit out of the tap into a glass - and it was delicious…so far so good.
So then thought, right I’ll have a glass now, and put the rest in the jug into the fridge for later So I lifted the jug off the base, only to discover that I should have lifted the entire base off the electric unit - because the jug had a huge whole in the bottom - so my lovely smoothie mixture ended up all over the electric base and my worktop !!! grrrrrrrrrrrrr
take care all
margaret x
Hello
Thanks for all previous posts. Sorry for anyone who is suffering at the moment. Must be awful but I hope that once all the treatments are over, you will all all be well on the road to recovery.
I have made a couple of posts previously and then my laptop broke. But back on-line again now.
I am starting the first of X6 FEC this Tuesday. Didn’t think I would be nervous but I am getting increasingly anxious about it which sounds very normal.
From your experiences, do you think it is better to have someone stay with me for the first night after receiving the FEC? My OH lives in London and I live in Hastings and altho he is coming with me for the first one, I haven’t asked him to stay over.
Is there anyone else starting around the same time as me? I haven’t had my wig appt yet but need to. But after having long hair for most of my life, I have been reducing the length of it just to make the transition from hairy to baldy a little easier. Everyone keeps saying how much nicer my short hair looks and I feel the need to keep reminding them that it is only temporary and I’ll have no hair very soon.
Also I have just finished reading a ‘book’ called Cancer Vixen. I really enjoyed it. I say ‘book’ because it is actually done in a cartoon illustrative format. The author had breast cancer and she writes about her experiences in a very real way. I recommend it especially for the younger ladies who have just been diagnosed.
Having a last blow out with friends this weekend as hope to cut down on all things bad (namely alcohol). A friend said that I should look at it as a 4 month de-tox! I had to explain that this is probably the most toxic period I will hopefully ever have in my life!!!
Hope to hear from you, take care
Nadiya
Hi Nadiya
You are bound to be nervous - I thik with the first it’s a fear of the unknown - you read about all the possible side effects and have no idea which ones will hit you - once you get this first one out of the way I am sure you will be able to cope better. I hve found (I’ve just had 3rd Fec) that each one has been very similar, though the symptoms do seem to be progressive - the yukky tasting mouth is only just kicking in now.
I think the most important thing I could tell you is that anything you experience in the way of side effects - tell your breast nurse or chemo unit, because they can and will help you. They will give you anti-sickness stuff to take - you should take it even if you don’t feel sick - it is far more effective at keeping it at bay than dealing with it later. Again if you experience other effects such as heartburn or constipation they will give you something to help with this. I initially used over the counter remedies (rennies and senokot) but when I mentioned the problem to my Breast Nurse, my pharmacy stuff after second fec included heartburn tablets, stuff for constipation etc - all for free lol!
Hair loss for me started around 16 days after first chemo - started coming out in handfuls so I clippered it to grade 2 - I now have a light smattering of ‘fluff’ - had a wig fitting but have never worn it yet - tend to stick with hats and buffs - or nothing in the house!
Had to laugh at your ‘de-tox’ statement - as you say rather a play on words, as this will almost certainly be the most toxic you have been - i admire you cutting down on the alcohol - not something i have managed yet - I like my vodka and coke too much lol.
There are a lot of women on here who live alone and have coped with the chemo - however there are equally as many who felt the need for a friend or family to be with them. I think as long as you make sure you are stocked up with the essentials - plenty to drink, books, music, snack food, ginger biscuits are good for the queasiness etc - then you should be ok.
I hope it all goes well - please keep us posted
take care
Margaret x
Hi Everyone,
thought Id join you, I started FEC this week having 6 cycles. Feeling ok so far, a bit burpy and a little nauseous, tho taking the anti sickness pills religiously and making sure I eat small nutritious meals.Its been really helpful reading your news, thankyou,
love and light,
Julie xx
Hi Nadiya
I am Jan and starting FEC x6 on Thursday - perhaps we should start a new thread, as this has become a long one. Equally the comments have been so helpful.
Thanks Margaret for your comments too as today i have been feeling a bit nervous about it all - which side affects will I have.
I am geared up for losing my hair and am still wondering whether to use the cold cap. I really dont fancy wearing something that makes you feel so cold - and perhaps that’s what myheadache is all about - had a low grade ache all day y’day and this morning when i wok up.
I have my wig appt 5 days after the first treatment.
Am wondering whether its worth having my usual trim/hair cut in a weeks time or wait…
a friend said …There is something cathartic about losing hair that goes withthe depth of the effect of the treatment …?
am still pondering on the cold cap thing.
Thank you all
will post how i am getting on
Jan
Hi Jan
I had the cold cap for my first FEC session, it was not a pleasant experience and i still found that my hair was thining, so I decided not to use it the second time around, and yes as expected I have lost my hair. I would suggest the hair cutting/thinning process especially if you have a lot of hair - its very distressing when it starts falling out - it gets everywhere. I got my OH to clipper it all to a grade 2 and it was the best thing we have done so far during this treatment.
Its now a relief not to have to de-hair the bed, the shower, the bath, my clothes, my mouth …
I thought I would find it extremely distressing as I am very vain - but its not, you do get a few stares and i even prefer to go out without a scarf or a hat but my family don’t agree - i alsmost feel proud of my smattering of fluff on my head - and someone said to me the other day you need to look at it that the chemo is doing what it’s meant to
Lots of love, luck and special wishes, we’re here if you need us
jackie xxxxxxxxxxxxxxxxxxxxxxxxx
Hi Viv
I also had my second FEC cancelled due to low blood count, felt Ok but tired and breathless, I also have pernicious anemia so my blood count is useless at the best of times. Keep you chin up and try to fight that awful infection you have, sounds like you have got a great weekend planned with your comfort food, watch some crap TV and just chill out
jackiexxxxxxxxxxxxxxxxx
Hi everyone,
Day 4 of third FEC and I’m a bit behind on this thread as I’ve been too tired to log on! It’s good to read all the latest news and to find out how you are all getting on.
Cally - re night sweats. After the first FEC I woke up 3 times in the night soaking wet and had to change my pyjamas. The second night was not too bad and after that was OK. With the Second FEC it was the same - just the first night was very ‘cold sweaty’. It’s strange because I don’t wake up feeling hot, I just wake up really cold and wet. With the 3rd FEC it was the same the first night but continued into the second night. Are these night sweats something we have got to get used to. It seems like it.
Viv - sorry your treatment was postponed again. But you’ve got the right attitude. A weekend of treating yourself and hopefully you will come back fighting fit.
For all those about to have the first FEC - I know we all have a bit of a moan on here but the underlying point is that it is do-able. For me, once the nausea has passed I just have to get used to having no energy. I definitely can’t do as much as usual. It’s lovely when you do get your energy back though for the last ten days or so before the next treatment.
I am so glad I don’t have to work at the moment. I don’t think I could do it - even for the third week. Good luck and you will feel so much better get the first one out of the way.
Love Lorna XXX
Dear everyone
I am starting my first FEC on Tuesday and although I am a bit nervous having read all the comments here I am prepared for everything that might occur.
I did read on this forum somewhere about the benefits of red smoothies for helping vein repair, but now can’t find the post and can’t remember which fruits were best. I thought I would be prepared, to try to keep the veins in good condition to help with cannula insertion. Can anyone point me in the right direction.
thanks
Karon
Hi Karon,
I read that as well. I think it just said any red berries. I am using blueberries and raspberries mainly. My favourite is those two plus apple and banana topped up with milk (I use soya but now sure which is recommended.) I am sure any old red berries would work.
Good luck on Tuesday.
Lorna X
Hi Karon,
Think it might have been something I posted following a visit to a nutritionist at the Haven. She said any red berries, strawberries, raspberries, actually anything ending in berries! I have started buying frozen berries (which she said were fine to use) which obviously are easier to store and also produce nice cold smoothies without having to add ice.
I found my veins started to feel painful after third Fec, still feel a bit sore but hopefully won’t get any worse!
Good luck for Tuesday, hope it all goes well, I was very nervous prior to my first chemo, but honestly wasn’t anywhere near as bad as I’d feared. Just keep thinking ‘another one crossed of the list’ and take things easy for few days after.
Love and good wishes,
Louisa xxx
Hi Lorna
Snap we are at exactly the same stage of treatment - I am also 4 days after thrid FEC, my hot flushes have definately been worse after my third treatment and are continuing today - although they do seem to be worse at night. I find myself constantly stripping off during the day and wearing layers is the way to go !!!
I am also not working at the moment and even the thought of it scares me silly, most days I am not dressed till 2pm, just have to take things very slowly, but you are right when the energy does kick in it’s great, you can actually do a bit of dusting or change a bed without a complete relapse.
Have a good afternoon everyone - we are just on our way out for a sunday lunch - cooked by someone else yipeeeeeeeeeeeeeeeeeeeee
Jackie xxxxxxxxxxxxxxxxxx