Glad you had a good day Mal.
Askrigg is our favorite village in the Dales. Wensleydale walks.
we were going to a village called Ayton near Scarborough though this time - familiar family place - it will still be there next year and so will I!
We are going mad a bit, well I am, I suddenly want everything done in the house - decorator this week and kitchen in november - probably very silly in the middle of chemo but it will all be over in one go. I hope to start 2009 with my holiday!
Gillian wedding - what is happening - give us all something to think of.
My hair is growing is little little bit!!
Well I celebrated a little too well last night! Put the Mamma Mia DVD on and off I went. Forgot to shut the curtains and just hope the neighbours didn't see a bald, lopsided, drunken woman dancing around with a glass in her hand. Suffering this morning but OK now. The kids have just gone and it was a bit mad to say the least. Even little James with his pot leg came. Spag. bol. for all and you can imagine the mess.
I was the same after the steroids. The first couple of nights up watching flims at 3 am. I am so glad I don't have steroids with the xeloda.
Glad you've got your 1st CMF over and done with Gillian. I think most people find it easier than epi don't they? Hope it's kind to you. You've not mentioned your wedding plans for a while. Have you got everything sorted and booked now?
And hope you still OK Nettie. So far so good. Just go with the flow.
Sorry to hear that you've abandoned your Yorks trip Gill. Still there's plenty of time next year. And you've got Madeira to look forward to.We've been walking in the dales quite a few times & my favourite place is Muker. Ah fond memories....... We could do with the decorators in. Not done anything on the house for months now.
Enjoy the rest of your week-ends girls
Take it easy
Sorry you didn't get to Yorkshire Gill, I'd love to walk in the dales but never have yet.
Another thing on my rapidly growing "things I will do next year" list
Well I have just had my first CMF and I am pink again! so maybe it is the steroids after all!
have good weekends ladies
I think we should all be at the tea party in spirit! What a lovely thing to do, Mal.
I am not going to Yorkshire - all my plans go wrong - but I don't care.
I am having the decorator in - has needed doing for years and NOW I decide to get it done. Plus my next chemo cramps the time I would spend there - too much effort for too little time. Will go next year - now I dare think of that idea.
Hope you sleep Nettie - drink the pink wee away! and don't worry if you get alll upset - it will pass.
thanks Gillian, yeah i'm on epi, maybe its that then lol,
OH says his mum went bright red when she had brain c and she had the exact same steroids as me so I thought maybe its them,
whatever it is, i hope it goes, there are healthy glows and then theres this! lol
keep smiling xxx
are you on Epi or FEC? If so the epi which is a red liquid made me REALLY pink for about a week afterwards. (evryone tells you how well you look!)
The sleeping thing was a bit weird for me too, not sure if it was the chemo or steroids. I had nightmares for a couple of nights as well usually days 2-3.
Be sure not to take the steroids too late in the day, 2ish I was told, or you will be buzzing into the night...
Best of luck
so glad for you Mal and Gill, hope the celebrations haven't left you too hungover!
Had my first CMF today so we'll see how this one goes...so glad too to be half way now!
So a good weekend for us all I hope, regardless of the weather. Hope you are feeling OK Nettie?
So cucumber sandwiches and jelly for the 8 little ones I guess..good for you
nettie is fine thanks everyone! xx
well better than i thought id be, just like a hangover really so far, red face.. whats that all about?
and woke a couple o times in the night and i was really wide awake, took ages to get back to sleep
all in all though, i feel quite good so far.
keep smiling! 🙂
love n hugs, nettie xx
Oh Gill - that's brilliant news. Bet you're over the moon. Hope you're celebrating too. You were due some good news - you've been battling BC for so long. The tax must be doing well. When are you off to Yorkshire? A little break would be the icing on the cake.
Are having 8 of my grandchildren round for tea tomorrow. Not done that since my surgery in June. It'll be good but tiring. I'm a real kid at heart.
Hope Gillian and Nettie are OK.
Take it easy girls
Hooray Mal - go force those drinks!!
I have good news too - my oncologist who never says 'good' said 'good' several times! The little free lump has gone we agreed and my Liver is fine and working as proved by blood tests and my cough has gone. I continue for one more and then scan - with the possibility of 3 more - but if it is working I am good for that.
I have never felt so happy leaving him.
Good luck Mal - keep well.
Gillian hope you are ok.
Nettie - hope you are ok too, take it steady and listen to your body.
Nettie - how did it go? OK so far? Don't forget to cross it off the calendar.
Yep little James now has a pot leg from toe to groin. He's feeling a bit sorry for himself so got him some treats. He'll be OK and soon be kicking everyone with his 'Iron man' leg.
Gill - how did your visit to onc go? Some good news?
Gillian - you OK after the change of chemo?
Good news from me! I now have a report saying I'm clear everywhere. Just cysts. Am going to force a couple of drinks down tonight.
sending hugs for james with mucho love! xxx
did you get him sorted out with a pot?
Just got back from my son's house. My little gandson, James (2 next month) fell off the sofa and broke his leg (hairline fracture). Hospital sent him home with a crepe bandage on and said to keep him in his buggy for the next week, no weight on the leg and to keep it elevated. I was fuming. How can you keep a boisterous little lad in a buggy for a week! So after my christies appointment in the morning it'll be a visit to the children's hospital to ask for a pot leg for him. Poor thing falls over when he tries to stand up.
Anyway GOOD LUCK for tomorrow.
I'm ok - only just got up at 3.15pm. just flacked out
brain running riot of things I want to do but body not doing.
got to get up tomorrow for onc.
busy day for us all
hope alll goes well for everyone.
Hey Gill. Can't do without my afternoon nap! How are you feeling after your 2nd Tax? No black holes around I hope. I'm now on my week off and just tired with a little nausea but nothing like epi. Hope it goes OK with the onc on Friday.
Good luck tomorrow Nettie. Drink plenty.
Hope the new chemo treats you well Gillian. Friday too?
We've got busy days on Friday girls. I hope we all have some good luck. I think it's overdue.
yay for afternoon naps!
Kitchens - we've still got a brand new fitted kitchen complete with cooker etc in the garage 3years on! Still waiting for OH to fit it. Hope your kitchens are finished a bit quicker!
Leading up to my 1st chemo I was cooking for England. The freezer was bursting at the seams with meals that I had made. It was my way of keeping busy.
Hey Gill, after trying (not very hard) for years I've gone down a size. Appetite not what it was. Hope you're still OK.
Nettie, you'll soon have the first crossed off the calendar.
Off for my afternoon nap now.
good luck for friday gill, you keep well too xx
It must be the time for kitchens - now we are not inertested in food
The injections which I keep calling GCSEs are GCSF Nupogen - probably simmilar - I don't inject for my diabetes so it is new for me - but the made me practice in hosp - with water
yay doesn't time fly when you are not having fun- or perhaps it is the limited fun that makes to plan everything and enjoy what you can.
I am seeing onc on Friday = not looking forward as there is always some little bad thing he tells me.
keep well ladies
I'm quite pleased to hear you say it kinda flies by...
I am keeping busy Mal, We've taken a leaf out of the 'open plan cupboard' book and now have 'open plan worktops' other half decided to replace worktops in kitchen, you know when they say 'oh it'll be finished in a day... maybe two'??? HA! dont believe em!, now he's panicking that it wont be done for thursday before my chemo begins.. not long no.. but I need to get it over and done, and then I can get on with things!
Bet you're glad to see the back of epi Gillian. Just hope that CMF is as kind to you as xeloda is to me. Just low level nausea for a few days and that's it. Still can't enjoy a drink though!! Oh for the good old days. That's brilliant news about your results - sigh of relief. Did you celebrate with a couple of Gordons? I realized that it's 5 months since I was diagnosed and I must have been in a time warp 'cos I don't know where that time's gone. In some ways it's seemed like forever but in most ways it's flown. Still, only 3 more cycles for me then rads followed by 5 years arimidex. We're getting to be the old hands on here now! Good luck Friday.
Keep well ladies
glad to say my CT and MRI on the brain were fine..hope yours are too Mal?
I was pretty lousy for the 1st 10 days after epi but much better now...get CMF on Friday so we'll see how that goes.
Hope all you ladies are faring well out there
Now Gill - that makes a change. It was beautiful here yesterday. You must have got our rain from Saturday. Sounds as though it went OK this morning and then followed by a little retail therapy..... They do keep you hanging around though don't they? Is it the Neulasta injections? I had to have one the day after epi each time but the district nurse came to do it (Are you used to injecting yourself with your diabetes?). Do you see the onc again now? I'm feeling pretty good at the moment but am dreading seeing the onc on Friday for the results of my CT scan. Trying to think positive....... Keep well.
Hope everyone else OK. Not long now Nettie. Hope you're keeping busy.
Take it easy
No sun yesterday rain and wind.
Just got home - had 9am appt got seen at 11 out at 1.30.
then husband and I went for lunch anad a little shopping - he has gone to a meeting now.
I have injection to do myself this time from day 5, to help my immune system.
thank s for thinking of me
how are you doing Mal?
how is everyone?
Gill - hope it went OK today.
Scary Nettie? no - at least you can reason with teenagers (most of them anyway). Huggy sounds nice though.
As I said my hair is growing but really weird. It feels like wire! Will have to go to the health shop I think and see what they've got.
Take my last tablet of xeloda tonight then a break for a week. That will be good. The side effects have been OK but I kept looking at the tablets thinking 'I don't want to take that poison'. When it's IV it's out of your control and you only get it every 2 or 3 weeks but knowing you're taking this poison twice a day for 14 days is really starnge.
Is the sun shining anywhere today? It's been blowing a gale and pouring down all day here so had to make the most of it and have a little retail therapy.
Stay well girls
ooh Mal you're very brave, secondary school is scary!! I'm in primary so the children are very 'huggy' and the parents always seem to send them to school when theyre ill so not a very good idea to go into work, although i am going to miss every single one of them!
whenever a supply teacher comes in and says 'oh i was in secondary yesterday', theres a huge gasp from everyone in the staffroom lol we are all scared of secondary school!
Hi again Nettie
Work in large boys secondary school as Bursar so I have my own office and only limited contact with the kids.The onc gave me a letter of support to go back to work as Governors weren't at all sure if I was going back too soon. It's worked out well though despite it being the time of year when there's loads of bugs about. The Head and Deputy both have streaming colds this week so have been shouting to me from outside the door. I told them I'm going to get a stock of face masks! Are you in primary or secondary? The flowers sound lovely and the tall, dark, handsome stranger even better!
awwww what a lovely thought (the weekend break) hope you find somewhere perfect. what job do you do? if you dont mind me asking, I'm a T.A, they all had a whip-round and sent me flowers, i've never seen such beautiful exotic flowers before, and delivered by a tall dark handsome stranger too lol
we live in Barnsley btw.. or baaarnsleh as we are known throughout the U.K lol
Are you setting a new trend then Gill with your 'open plan cupboards'? Glad you're getting away next week. Where in Yorks are you going?
Like Julia I've been working too and have managed about 5 hours a day maximum (like you Nettie I work in a school). It does me good to get up and out and have something else to talk and think about other than the dreaded BC. I went in this morning and had a presentation in the staff briefing session. They had a collection and gave me a voucher for a week-end break. I promply burst into tears and was a blubbering wreck. So I'm trawling the net to see where we can go.
Whereabouts do you live Nettie? We've a lot of family in Yorks (Harrogate) and my OH is a yorkshireman.
Hope you've all got lovely things planned for the week-end. It's sunny in Manchester today but tomorrow back to rain (What's new?).
Take it easy
lol @ 'open plan cupboards' never heard them referred to as that before!
gill wrap up warm if you're coming to yorkshire, its sunny but coooold atm!
carrie, thanks for the info i'll not do a 'big shop' then in case i go off everything lol will have to send hubby to shops on an 'as and when' basis hehe...
hope it flys to November for you and that your veins hold out long enough *crossed fingers*
enjoy your trip to lakes (lovely part of the country) and well done working throughout.. they wont let me cos i work in a school and infections are rife :(.. i'll just have to enjoy the resting... lots and lots of resting *yawn* lol
HI: Not been on this thread before but have just read thru everything. I started E-CMF on 28 May, will be finished with the lot – thank God – on 25 November.
I have been extremely lucky with side effects – once I recovered from the after effects of op – boring seroma being drained for about 7 weeks – I found the epi OK. It changed my taste, food was very bland and alcohol tasted vile for the first week. I have not had any sickness or other problems – bit of a sore throat one week sorted by antibiotics – except the hair. Mine went just before second epi but I had the wig ready – really good monofilament one by Raquel Welch which had been cut to suit me by my hairdresser so that was OK. Re the wigs, get the best ones you can – my hospital will pay whatever – my first one would have been Â£200 but they didn't have a problem with that. I bought a second one from the headcovers website. It is American but service is very good, also as their wigs are counted as medical supplies you don't pay any duty. Delivery is about 3/4 days by FedEx. They also fantastic hats and turbans, etc. It is run by two women who had BC and found the wigs, etc, available to be rubbish so they set up their own company.
CMF is also going well although I never assume that just because 1 and 2 have been good 3 & 4 will be, I treat each one as the first. My veins are standing up well – have tight vein in left arm – surgery was right arm but we have used that once. Just need to find four more good ones in my left arm and we are thru. I take the C part as pills for 14 days which is boring trying to schedule the "take on empty stomach" around eating but we are getting there.
Gill: Hope you get to Eden Project – just take lots of water with you, it is very hot in there!
Hope all of you on here are getting along well – as everyone says, nobody wants to be here but we can all cope. Look at all the other threads – such as Any Good Buddies? – it will take you ages to get through it and some of the stuff is a bit scary but the info and support is fantastic. I'm off to the Lake District next week so had better do some work. Incidentally, I have worked all the way thru this, but am down to two days since July as am doing maternity cover and Mum has returned doing the other three days.
PS: Sorry this is an essay!!
Nettie, I rememmeber not knowing whhether to look forward to it or not. Enjoy your anniversary!
I found my appitite and tastes changed from each time - my poor husband just thougt he knew what I wanted to eat and I would change - I also had to change all the soaps in the house because I could not stand the smells - which I had previously liked, and hand washing was horrible - was any one else like that?
Yes I will go to Devon later - probably not until November now and we have thing planned for the next good week - going to Yorkshire. perhaps I should not say it yet? My mother-in-law's ashes still have to be buried!
I hope in Novemebr it will be after my last chemo for a while, but I will not know if it has done the trick until after the last one and a scan.
Hope you are feeling better Gillian.
Feeling good now the cold I developed has nearly cleared. Planning the kitchen this morning. It has been falling apart for some time - really, we have open plan cupboard (no doors).
sun shining here.
i have read a little of the top tips thread and went shopping on wednesday for stuff like ultra-soft toothbrush, baby hairbrush, ginger biscuits etc etc...
and yes i do have mixed feelings cos i cant tick the calendar, but is our anniversary on sunday so i can at least enjoy that before it all starts 🙂
Bet you've got mixed feelings about the delay Jeanette. It's good to get the 1st under your belt but at least you've got a good week. Have you checked the 'Top Tips for Chemo' thread. Some useful tips there.
hurraaay for your hair maltomlin!!!! it must be a fantastic feeling 🙂
im really sorry about your holiday gill 😞 but the main thing is that you are ok! can you go to devon some other time?
my update: they delayed my treatment til next week.. theyre stuffing me full of augmentin and thrush tablets (just in case) and its all systems go next thursday 1.30pm (so i dont get to put a cross on the calendar yet (booo!) but they dont start giving me the epi til next week! (yaaay)!
thinking about you all! xxx
P.S. My hair IS growing!
Oh Gill and I thought you were having a fabulous time in Devon and was feeling very envious. Hoping you feel OK now. You'll have to plan another jaunt.
Sorry you've been feeling so rough Gillian but at least that's epi over and done with. Hopefully you'll find CMF easier.
I had my CT scan on Monday to look at the nodules they found before. Results next week so a few stiff drinks the night before.
Hope the rest of you girls are keeping well and it went OK for you today Jeanette.
Onward and upward.
Hi everyone - I didin't get to Devon I went into hospital instead. I rocketed a temperature on Friday afternoon and was taken in, I came home on tuesday evening and an still on oral anitbiotics. I had IV antibiotics in hospital.
Although it was not nice, I had excellent treatment - they take it very seriously and isolate you.
So my plan failed. Glad to hear about everyone and see you are ok.
Bet you are glad to be finished with Epi Gillian!?
I will look at that wig site.
I would recommend a shorter cut before it comes out - then I clippered mine to 7, when it happened. I still have a VERY thin sprinkle of hair. I wear scarves and hats cos I don't fine wigs comfortable. mY mother wishes I would wear one tho' I know.
best wishes to all - go well
havent been on for a while but glad to see there are some new bods!
Had my last epi 10 days ago (4 of 4, before 4 x cmf starting nextweek) and although it's no bed of roses it's done and dusted now and wasn;t as bad as I thought chemo would be.
Hair wise...I shaved mine off when it started to feel weird and come out really easily if I tugged it. I didn't want to wait for it to fall out. It was probaly the worst night of the whole thing so far...it was the night it really hit home for me...I had a few G and Ts and just set about it.
Epi-wise...1st OK, 2nd had a couple of bad days, 3rd OK, 4th...lousy, I have had a whole week of feeling rubbish...but it's done now and I am on the way back up again.
Hope you are all well and battling away
Sorry to hear that you landed in hospital Alison. Hopefully you'll be OK now and even better on CMF. I read somewhere (before I started chemo) that Manuka honey is good for keeping your WBC up, so I have been taking it every day. I don't know whether it is the honey but I've not had a problem.
Good luck for tomorrow Jeanette hopefully you'll be able to get it over and done with. One to cross off. I know I felt like running away before my 1st. You'll be fine. Let us know how you get on.
Junieliz, I hope you're still feeling OK. My 4th epi was the easiest but then we're all different.
I hope you're feeling upbeat Jean.
Hope the rest of you are out enjoying yourselves.
Hi everyone, I'm Jeanette,
I start epi-CMF tomorrow (if they dont decide to put it off a week, waiting for dental work to heal) half of me hopes they do put it off and half of me thinks just get it over with, I wont find out until I get there.
I've already got a wig and have worn it to go visiting/shopping etc even though i dont need it yet lol.. I love it, its way nicer than my own hair! a bit paranoid though whilst wearing it wether people can tell
other than the wig, I am totally unprepared and have no idea how I'm going to be so no idea how to prepare for it.
i think you are all amazing and hope you know how amazing you are.
Hello Tabbycaz (and all)
I started my programme of 4 epi and 4 cmf on 13th August. I have just had my third epi today.
I read the helpful notes and found them very very useful. I ordered some headgear from the headgear.com website and I have found them safe, quick and really good. The website has various headgear. I have three wigs. At our hospital a wig lady comes to the unit and able to try different styles etc. I purchased two short (one blonde and one redish), and one blonde longer (a bit like my hair before chemo).
Before treatment I had my hair slightly thinned but nothing grand. My hair began to fall out days before my second chemo (just as I had been advised). Unfortunately I was in hospital when the hair fell out as my neuts had dropped, temperature rose and I had an infection in breast! The hospital stay (four days/three nights), was fine, I had iv antibiotics and paracetamol. I had to ring hubbie to bring headgear to hospital.
I am lucky that my hairdresser is mobile so I phoned her when I got home from hospital and she gave me a really short haircut. I am still working and my colleagues liked the short style - I managed three days, after that time I was into wigs and headgear. I feel very confident in both headgear and wigs, though do take them off when I get home. I must admit I don't really like seeing myself in the mirror with balding patches etc - so I try not to look! I feel fine looking in mirror with headgear or wigs.
Unfortunately the infection came back and neuts went down before third treatment was due and therefore had to be delayed - but managed to stay out of hospital, after antiobiotics have managed to have third epi - only one more epi to go. Did feel a bit sick today but on sick tabs, steroids etc. Will probably be hyper tonight!
Best wishes to you all
Hello and welcome to junieliz & Jean
I'm glad to say I've finished with the dreaded epi. I am on arm 4 of the tact2 trial so I had 4 epis (every 2 weeks instead of 3) and am now on xeloda (oral chemo). 1 down, 3 to go. Epi made me feel awful and by comparison xeloda is a breeze. I think everyone has 'down days', some worse and more prolonged than others. Work has been a lifeline for me. Just the getting up and ready and going out mixing has done me a power of good even though I don't always feel like it. I do have to go to bed in the afternoons for a sleep though otherwise I feel dreadful. And going away for a couple of days also perks you up.
Gillian (curtainqueen) will hopefully be on here soon. She finished epi a couple of weeks ago and is starting CMF next week. Perhaps she can let you know how she gets on.
Take it easy
Can i join this thread.
I too am on Epi and CMF, 4 of each. I have my 4th Epi on 7 Oct, and have to say it's been making me feel pretty crap most of the time. I'm hoping and praying that CMF is a bit better..
The hair loss was hard to accept, but i'm so used to it now, so are my grandkids, they love feeling my almost bald head 🙂 I had my hair cut twice before i started chemo, mainly cos i have always had long hair, and i needed to get used to it being short. I finally had it shaved because i felt it was the only thing i had control over. I got a wig of the NHS and it's ok, but i do prefer wearing scarves, unless i go anywhere special.
Does anyone else have really bad "down" days, if so how do you cope.... i cry over the least thing, and feel so sad a lot of the time. is this "normal" reactions to what i'm going through. Some days, i'm so tired i have to force myself to get up. I guess i'm lucky that i don't work outaide the home, so i can rest whenever i need/want to.
Thanks for reading and good luck to everyone as you go through your treatment
Love and hugs
Hi Tabbykaz, I had my fourth epi yesterday and so far feel fine, I haven't been too bad all the way so far, I am hoping that the CMF is not too bad, had trouble with my veins though sounds like I will have to have a line put in. My hair started to fall out about day 17 bought a wig which is nice and does give me confidence, also got two hats ready for cold weather. Take care hope you are ok junieliz
Thanks Mal, I will take a look at the Top Tips for Chemo you mentioned
Losing your hair is obviously on your mind. I can honestly say that it hasn't bothered me but then again I have found a really good wig. Some people prefer scarves and hats. We're all different and it's whatever you're comfortable with.
I didn't have my hair cut beforehand. You know when it's about to start coming out as your head/scalp is sore, and that's usually about 14 - 17 days after your first epi. It comes out in handfuls and that was the time when my OH took the clippers to it. I wouldn't cut it just yet. Wait a couple of weeks.
Hope you're all geared up for next Monday. It's not pleasant but it is doable everyone reacts differently. Make sure you read the thread 'Top Tips for Chemo'.
Starting Chemotherapy next Monday 6th October.
This may come across as a bit of a silly question but I am wondering whether to get my
hair cut before I start chemo, or see how it goes and if it falls out then get it cut.
The reason I ask is because I remember reading on here somewhere a few months ago
that your head can get sore while having chemo. I was wondering if/how many people
have had sore heads whilst having chemo.
My other thought is why pay out to have my hair cut if it's all gonna fall out anyway!
But does it ALL fall out or only clumps, in which case I will be better to have it cut before
treatment starts. I'm due to start 4 lots of Epirubicin then think it's 4 lots of CMF.
Sorry I sound vague but thought this would be the place to ask being
as we're all in the same boat unfortunately. I know there are other things to worry about
apart from losing hair, but thought I'd ask anyway.
Would be grateful of any tips you might have.
Glad you seem to be coping with the dreaded epi really well. Long may it last.
Hopefully you will be happy with your wig. My NHS wig was like a clamp on my head and I wasn't confortable in it at all so I bought one from Contrast Wigs (online) and the difference is amazing. It's so much lighter, more comfortable and feels like real hair. Just a quick dip in water with a little washing up liquid, drip dry and it's ready again.
I am sure my hair has started growing again although my OH still insists it's my eyesight (could be his of course).
Hope Gill is enjoying her trip to Devon and Gillian is out and about.