Hope you don’t mind me joining in. I’m in the middle of treatment too, but seem to be doing things the other way round to most of you on here!
I’ve completed my chemo, so happy to give any advice / tips (I had 4 x Epirubicin/cyclophosphamide then 4 x Taxotere), but am off for my mastectomy next Wednesday. I would really welcome any help anyone can offer on what I should take to hospital, what to expect whilst I’m in, how long recovery is likely to be etc. And then after that I’ll be having radiotherapy starting February, so still a long way top go! I’m 49 by the way, living in North Stafforshire, and travelling to Christies in Manchester for treatment. 3 children, no dogs, but 2 cats and a guinea pig!
Hi everyone, a big welcome to the new ladies. Loads of luck for today Sue. Gill, glad you enjoyed pet stories - our first dog Cassie was a lab/border collie cross and she ate anything and everything! I came home one day to find the lino in the kitchen had been completely torn in two. She must have caught hold of one corner and just tugged! When I could stop shaking with laughter, I quickly pulled it back down before OH came home - his sense of humour isn’t quite the same as mine! She had a liking for emptying the bin - her favourites to play with were eggshells and used teabags! Jackie, let us know how you get on with the wig. You too Louise. Mine won’t be ready until my 3rd chemo at end of Jan and I’m losing hair at a great rate at the moment but have some secure hats that I’ve been wearing for a while. Hair is falling out elsewhere too, although not yet from eyebrows or eyelashes, I’m sure that delight is to come. Lousie, glad you slept. Hope you feel okay. My first FEC left me quite nauseaus and with a bit of a foggy head, don’y feel too bad this morning, like you got up earlyish for breakfast so I could take meds. Unlike you, I went straight back under the duvet! A note about staffs attitude towards patients - most outpatients have a feedback form for patients to fill in - just to say how they found the service. I urge everyone to use them, either for good comments or otherwise. It’s so important for staff to treat patients with empathy - if they were in the patients shoes, how would they like to be treated? Noone’s asking for special treatment, but when you are going through a traumatic experience as we are, bad attitude is the last thing we need to deal with. All the team at Guys are angels and very grateful I am for that.
Well, enough for now. Hope everyone has a good day, here it’s cold but bright and sunny so may venture outside later, nausea permitting.
Take care all, big hugs, Pat x
Hi Julie, Just saw your post. Good luck with your op. Snap, I’m also 49, I live in London. I had WLE and clearance of nodes in November and am on 3xFEC (2nd yesterday) and then 3x Taxotere. Followed by 2 mths radiotherapy then 5yrs Tomoxafen. When I went in, I only stayed overnight so took dressing gown, little vest tops, slippers, toiletries, the usual. Refreshing body wipes are good as you get quite hot and sweaty so they’re good for a quick freshen up. And chocolate is a must also! I found it easier to use the hospital gowns - easy access for drs etc and saves your own getting spoiled. On my ward, the two other ladies there had both had double mastectomies. They were in surprisingly little pain, as was the case with me, and even with the drains could move around quite easily and felt well. I think one lady stayed in for 3 days and the other 5 days which seemed very quick but the healing process had gone well. I met one of the ladies at a later outpatient appt and she was in great form. She had quite a lot of fluid drained - I had a small serom under my arm which, once drained was fine. Hope all goes well next Wednesday, keep in touch and let us know how you’re doing. I’ve heard various tings about the Taxotere, most of which has left me a bit afraid, but then you read another thread and the person says that it was much easier than the FEC. Everyone reacts differently I guess. It does seem a long old slog, what with all the treatments, appts etc but there is light at the end of the tunnel, and glad to hear you have some animals to keep you amused.
Take care, Pat x
Hi all. Thank God for other people having foggy heads - not that I wish it on anybody - but it wasn’t mentioned to me about this side effect, and thought I might have grown something extra for good measure in my brain! Felt proper drunk - without even a snifter when I laid down, and only just had 1st FEC on Tuesday. Julie, I had a mastectomy and recon with the back flap in November, and it wasn’t half as bad as I thought - really! Only problem was that drain wouldn’t stop draining and eventually had to come home with it and change it myself (not rocket science!). But I was unlucky in that the back wound still hasn’t healed up properly and have to go in for a quick skin graft in about 12 days time before 2nd FEC. But you’ll be fine, my back was just being awkward - new boob is wonderful! Currently waiting for wig to drop through door - today, hopefully - woolly hats and fake eyelashes at the ready! Just got a new laptop after being offline for couple of weeks and am currently repeating myself on every thread! Sorry for boring people! Good luck to all, xxx Jackie xxx
P.S. Julie - Baby wipes, baby wipes and more baby wipes! I was in Barts, and made full use of their paper knickers - keep you nice and fresh down below! x
Pat, your dog Cassie reminded me of years ago when I ripped all our kitchen lino in two! I had a friend over, and had made coffee for us, and (thankfully before drinking it) my friend noticed something black floating in it. It looked like an ant, which I couldn’t understand, but then we looked and saw that the kettle was full of them - a party of them must have crawled down the spout or something and then been boiled alive!! Of course, we then started poking around, lifted one corner of the lino and found hordes of the wretched things, so just yanked and pulled until had all come up! Hasten to add that we have moved since then, and have no infestations of any kind in our present house!!
Thanks for the hospital tips too - I’ve got some wet wipes so will pack those, and think the chocolate sounds essential (I’m a great believer in tending to our mental as well as physical health!).
And Jackie, yes - Chemo Brain is a definite side effect. Early on in my chemo I was half way through getting dressed after my shower when I lost my dress! I couldn’t work out what on earth had happened, and asked my teenage daughter to come and see if she could find out what I’d done, and what had I done? - made the bed with my dress inside it!! I also used to forget words half way through a sentence, which was very frustrating.
The responses to chemo do really vary from person to person. I did find taxotere worse than EC, but even so I completed six months of chemo with no sickness at all, and only a couple of afternoons in bed, so it was not bad at all, and well worth it (I had an MRI two days after my final session which confirmed no active cancer cells remaining, so the chemo really did its stuff).
Julie,
I did put some tips on the surgery discussion ( post op tips) (had bilat mas in dec)
Was really pleased to have taken arnica, hypericum and calendula, surgeon said I had healed very well and was impressed with lack of bruises. Try to check out a homeopath for safest advice. Also believe the five elements acupunture pre and post op helped along with Bach Flower remedies but I am and ole hippy at heart!
Choc a must, but that goes without saying for me! Also loved having flasks of soup served in mug from home brought in by OH daily, quite a highlight after the hospital food!
Eventually got a pillow from home as couldn’t get comfie on hospital ones.
Wipes of all variety useful! Facial for face, baby for other parts and flash wipes if the loo or basin looks dirty, although my hospital was very clean.
Ipod with comedy podcasts cheered me up, I think they thought I’d had to much morphine when they heard me giggling but I was watched son’s downloaded “Black Books” which made me chuckle.
Button Up PY’s were easiest to get on.
Fresh fruit, figs etc ( for bowels!)
Coordinator for visitors very useful, a close friend booked all my visitors and thoroughly enjoyed ruling my life for 4 days! It meant I didn’t have to ask some people not to come and that I had a visitor for each session which I really enjoyed.
I think it’s difficult to drink too much water so take some in if you don’t like tap water it seems to be a cure for all ills!
Found vests a bit uncomfortable at first as skin felt very tender, best bra so far has been frances post op bra from ameona ( online or brochure from BCN).
Hope this is helpful, I think we all have some much experience and expertise to share and this is a great way to learn from each other, best of luck.
G x
Hi everyone! Been out of touch for a few days and amazed at the number of new posts-welcome to all and it is great to share with folks who are roughly at the same stage! Well took advice and contacted bcn re onc app, so got a phone call yesterday to say I have to go in on Monday at 10.30-instantly felt first relieved then totally panicked and had the worst night for ages! Ended up going to older daughters bed (she is back at uni studying for an exam tomorrow), but tossed and turned the whole night with horrible thoughts going through my head.
Feeling shattered but a bit calmer now, though wasn’t reassured when I read you have to wait 3 weeks narnia! Younger daughter (19) wants to come with us to the app, and though I have been telling them all that is going on, don’t know if I can cope with her at the app in case I or she gets upset-any views on this?
OH wants to take me out for a meal tomorrow night(Last Supper!!!??) but not sure if I am in the mood for it.
Sorry for being a moan today but on the positive side I attended a fatigue, exercise and relaxation seminar on Wed run by BCC, and as well as meeting some inspirational ladies it was very useful and took away some great material to help cope through treatment-also signed up for another session in March on diet and healthy cooking, with a demo which we will get to taste-sounds good to me!
Anyway while I still have an appetite better go feed OH.
Good luck to girls with apps today! Lyn xx
Hi Lyn, it’s up to you really whether your daughter goes with you. If she doesn’t go, will that mean you’ll go alone? I attended by first breast clinic appts - first one for biopsies and then to get results - alone. I coped alright with it but now I’ve gone a bit to jelly! so thankfully my husband insists on attending with me. From my experience, the appt will go thru all the details of your cancer and the appropriate regimen they advise for you. My onc is great and answers every question, they can go into detail about the individual drugs and SE and it can be a little overwhelming. Also, I’ve found that my husband has remembered to ask a question which I hadn’t thought of. Also, it helps to have someone there in case you forget some of it.Having said all that, it’s an individual thing but I know my family are desperate to help in any way as they feel quite helpless, maybe she’s feel like that and wants to feel she’s doing something for you. Whatever happens, I’m sure the appt will go well, and I’m glad you chased the appt up. That seminar sounds good, I’ve signed up for a ‘Look Good Feel Better’ session in April and am really looking forward to it. I’m not a vain person but at the mo I look in the mirror and frighten myself!!! Hope you manage to get some sleep, I know when appts are looming it’s easy to get bogged down with it, I try to just deal with it one day at a time, and think of the appt as positive coz they’re gonna tell u how to zap the damn thing!
Take care, and hugs Pat x
My children are younger than yours (14,12 and 9) so different to your 19 year old - but I would say go with your first instinct. I fully agree with Pat that it is great to have someone else at your appointments with you - I’ve had my husband whenever possible, but have also had a good girl friend come along sometimes when he has not been around, and it’s invaluable both in peactical terms for remembering to ask questions (and to remember what was said afterwards), but also in terms of moral support.
Having said all that, I’ve sometimes gone with my Mum, but have never asked her actually in to the appointment with me - I think in some ways she is too close, and I also feel I want some control of what news she gets, and how. Does that sound odd? I think what I’m trying to say is that I don’t think I would want my daughter to come in with me, but it is obviously up to you.
Good luck with the appointment whatever you decide
Julie, I know exactly what you mean. My husband comes to everything now, and sometimes I feel like I’d like to go in on my own but I wouldn’t want to upset him. My daughter is nearly 25, very loving and supportive as well as practical but I don’t know if I’d take her. It’s a tricky one. Having a girl friend is ideal but all mine, lucky things, are at work! Lyn, do what feels right for YOU.
love and hugs, Pat x
My daughter is 27 and a bossy, nosey teacher. Wouldn’t have been able to remember a quarter of what the docs have all told me over the last couple of months if it hadn’t been for her. She doesn’t get emotional - not with me there anyway - and just gets all the relevant facts. Bit of a godsend really! (I think it might be something to do with her being on maternity leave and the fact that I was due to childmind my new granddaughter when she went back to work (the date of which has been and gone!) So we’re all desperate to get me mended for more than one reason! x Jackie x
Thanks all for those comments. My hubby does come with me to all apps and has been very supportive-also remembering to ask questions I have forgotten or to get an angle that I hadn’t thought of. As to whether she comes in or not I think I will discuss what we are likely to find out and then let her decide if she still wants to or not.
Julie-interesting what you said about your mum- my mum had a mastectomy 18 years ago and should be the person I turn to but in reality I am keeping her at arms length as I find I simply can’t discuss wih her things that I am quite comfortable talking to friends about and I think she is finding that difficult to cope with.
Jackie-loved your comment about bossy nosey teacher-my daughters would usually use that to describe me…!! They see me as a bit of a control freak and have to admit that is partly why I find this whole thing difficult as I feel I am not in control! Lyn xx
Good evening ladies and special hello to newbies!
I’ve just spent about half an hour doin a big long post to your all, only to lose the bloody thing !!! Have just discovered the ‘big input’ button - a learning curve methinks!
Well I’ve had a long but very productive day starting with my visit to the Onc, he is a lovely, patient man and listened to and answered my many questions.
My fantastic BCN attended too and had a big long chat with her after the Onc had left.
I am to start FEC (no mention of any other type of chemo) on 21st Jan at Christie Hospital. Onc has said if my body can handle it he wants me to have 8 SESSIONS - am a bit concerned about this cos am I right in saying that the usual treatment is 6 ?
He’s also recommended a full body scan too.
The more I think about it the more worried I’m getting about the amount of sessions he’s recommended - as usual didn’t think to query it at the time, duh!!
Following the hospital visit, we nipped in to my works to see all my colleagues and they were so pleased to see me and made a right fuss of me, it was great
Weirdly it’s the first time I’ve felt ‘normal’ since my dx (Sandra if ur reading this, dx means diagnosis) on 1st Dec - just seeing them and all work stuff going on around me. (does that make sense?)
Julie the BEST thing I took into hospital was a V pillow. Argos sell them for about £7 with a pillowcase. I used it for sleeping too, I couldn’t have managed without it.
You will probably find that the op itself isn’t half as bad as you envisage, the anticipation was the worse bit I found - honestly. I had full left mastectomy and full lymph node removal on 16th Dec)
Louise - I do hope ur swimmy head gets better soon chuck, sorry I can’t suggest something helpful for you but would it be worth mentioning it to the chemo nurse on ur next visit?
I would really appreciate some feedback on the 8 sessions of FEC please, if anyone out there has heard of such a thing ?
Loads of love and strength to all of us
Sue x
Hi Sue, and everyone!!
Yep the old head has stopped swimming about, and actually managed some toast with a bit of pate for tea - simply couldn’t face the chilli i made for an army (LOL) yesterday!
Yet another things now happened - i,ve just washed the old barnett in the bath (hair is short - not in quantity but length!) and i had a fair bit come out - it was wrapped round my fingers & when i let the plug out there was a fair bit in the bath as well- is this a bit quick??? or am i getting even more paranoid? (if thats possible at the mo!) I can’t help with the rec.amount of FEC you’ve been recommended to have Sue - don’t forget to ask at next visit or you could ring the BCN.
Well, loads of love to everyone this evening, will be back posting tomorrow, having the wig fitted in the morning!!!
Louise xxx
Hi Louise
So pleased your head has stopped swimming and you’ve managed to eat something - perhaps that’s the answer, loads of sleep. They reckon u have to listen to ur body and when in demands rest, u need to sleep, it’s the body’s way of re-energising (big word of the day
I have just been reading my chemo literature and it does say in there that sometimes the hair loss is very sudden and quick for some people, so it looks like you’ve been a bit unlucky if u were trying to hang on to it chuck.
Personally I would rather it happens quick cos I’m the type that if somethings gonna happen then instead of worrying and wondering, I would rather it be done than draw it out, if you know what I mean.
A lady on another thread (Mal on “2nd chemo tomorrow”) has responded to my rather panicky question about the 8 sessions … she’s done 8 herself and is now on radio - what a brave lady and so good of her to share her story and put my mind at rest, so it is do-able, phew! I’m still going to mention it to the BCN next week when I see her.
Good luck with the wig fitting - hope u enjoy it and come away feeling a million dollars:)
Top o th’morning to everyone else and will post again later.
Love Sue x
Morning Sue! (and everyone)
Managed to drag myself out of bed under OH instructions - ‘you need you pills!!!’ - meds taken, until lunch anyway.How much toast can i stand i wonder?? it’s about the only thing i fancy, the old tastebuds have gone wonky.
I’m glad you’ve had your mind eased a little with regards to you 8 sessions, it’s so good to hear that the lovely ladies on this site are only to pleased to answer our questions and worries.Sometimes you feel daft asking the white coats what you may deem as a daft question, so this is such a lifeline as there are many people who can also help!
I have cancelled the wig job this morning, just not up to driving today and would rather not be messed about with if you know what i mean!!
On the lighter side, i’m rather pleased my hair is on it’s way - may seem strange til i explain!! when i came out of hospital we stayed mith mum and dad for a few days.Dad always colours mum’s hair ( hers is very short and wavy).I had mine cut just before i went into hospital,(mine is short with blonde hi-lites) all the rest of the colour was cut out. It just seemed so dark, probably cos thats how i felt, so i decided that even tho i would lose my hair eventually, i would have it hi-lited to make me feel brighter!!!
This is where it all went wrong… dad, was busy colouring mum’s - Come on Lou, we have a spare colour!!! Of i go, and hey presto 30mins later - I’M GINGER!!! arrgghhhhhhhhhhhhhhhhhhhhhhhh
OH YES!!! apparently, i have a lot of natural red tones in my hair, and as the colour was beige blonde it picked up the red.1 trip to the local hairdresser and 50.00 later it’s been bearable. My normal hairdresser and best friend, is desperatly cutting away to get rid of as much as possible! Now, this is nothing against anyone who has red hair, my niece&nephew are both very red and it’s lovely, but it just didn’t suit me at all!!!
Anyway, enough gabbling on, i’m going to try the ironing(?) it’s staring at me!
Hope everyone’s doing ok today???
Hugs to all,
Louise xxx
Sorry, louise, i’m sitting here laughing my head off…your hairy tale reminds me of three christmasses ago, when my daughter, who always colours her own hair, offered to do mine, as a christmas treat.to cut a long story very short…I also apparantly have a lot of natural red in my hair ( Irish and Scottish ancestry might be the cause!), and the mid-blonde effect sarah was attempting turned out with me looking like Johhny Winter (for those who don’t know, he is a famous American singer, who happens to be albino)…it was awful, and i couldn’t see what she had done until i went to the loo as there was no mirror in the room she was doing my hair in.when she rinsed it, my hair felt very slimey and the hairdresser i went to for rescue refused to touch it as she said any more treatment would make it snap off.So I had to live with it for a month or so, and attend christmas parties, bearing all the ‘ohhhhhhhhh, errr, that looks nice…’ comments…never again!!
Hi Narnia!!!
OH MY GOODNESS!!! many years ago a school friend tried to hi-lite my long,permed hair ( trendy at the time!) and made a COMPLETE disaster of it! I always vowed i would never let anyone who didn’t know what they were doing touch it again! It’s amazing how you forget these things when your not feeling yourself!
The only thing that bothers me… when all this is over, present hair gone, HOW/WHAT colour will it be then??? mmmmmm, me thinks i’d better keep fingers crossed!!!
In Dad’s favour, the hairdresser said he’d done it very well and not missed any!!!
the things we do!
Love to all,Louise xxxx
Hi again everyone!
OMG Louise, you’ve given me such a laugh, I could just picture everyone looking with total shock at your ginger bonce
Narnia I once had what I would call my Billy Idol phase and did the cropped and bleach blonde look from long and straight.
Worrying thing was I actually suited it and got loads of compliments - (mmm in hindsight maybe the compliments were a bit tongue in cheek? I’ll never know)
I’ve had a few hair mishaps…another memorable one was a few years ago when beaded hair was all the rage ala Bo Derek!! My friend did a lovely job on mine with the beads just before I went abroad for a fortnight. BIG MISTAKE… my head burnt in the sun, inbetween all the little plaits and my face swelled up to balloonlike proportions…it looked dead attractive, not! Trying to undo all the plaits on a severly burnt head was no picnic either and I still remember the trauma of it all. My friend was helpless when I told her!!!
Just received a letter from the hospital with a date for my body scan - 16th Jan, gosh that was quick, only saw the onc yesterday.
They’ve also sent a bottle of ‘gastrografin’ which I think is a type of Iodine dye, along with a load of dates and times to dilute and take with water before the 16th.
I’m glad it’s before I start chemo on 21st so it’s out of the way. Will be VERY anxious waiting for the results though as, for me, this is a kind of milestone and I’m praying that I get the all clear from this so I can stop worrying about the ‘spreading’ issue.
I’m just about to ring my friend who’s a hairdresser and ask her if she’ll crop my hair sometime soon … eeeek.
Loads of hugs to everyone
Sue x
