Many thanks vertangie I will take a look at the top tips!
Hi everyone,
Hope this finds you as well as can be expected. I must put you right it was not the sausage rolls. It was the 2 litres of fruit juice I drank because I still had the ’ I have licked a dog all night’ tongue and was dehydrated from the chemo still. So many people were chatting closely, with loud music going, I was trying to disguise the foul breath I was convinced I must have. Gave myself a fruit juice enema!!! Boy does that burn when it reaches the final destination, sat in the bath for a long time the next day! It is really annoying that my bad mouth/ throat keeps getting slightly better then back to worse. The epi is def going for the mucous membranes with me and acidy still too. Any good tips anyone? The tank top terror got me today to admire his hedge, would I like to look at the big hole he had made in the middle of the bush? NO I do not want a closer examination of your bush!!!
Well just wondering how much longer the tour goes on Nicky? You have really given him a great time, hope he appreciates it and reciprocates when you daughter goes back. It must be tiring, having to keep the wig on when you are not used to it though. I’d be going to bed early to take it off. Thanks for your kind thoughts as always about support through the next bit. Lisa is changing too and it is a bit like starting the first one again. People say CMF is much better but then go on to say how terrible epi was. It was not up to terrible status for me, and I believe cyclophosphamide is the worst make you sick drug, Well it has to be done so not point worrying in advance. I have heard so many stories of people who started in much better circumstances than me and were unlucky to have a recurrence that I should just be determined to just finish it. Lorraine hope you are more fortunate this time with how long it hangs on and that this dose went ok. Kirsty I agree no 3 seems to have accumulated, my mouth is so bad this time just won’t go completely. Good luck with HR, wonder why they want to visit? Keep us posted. Angie and Carrieann hope you have a good weekend ahead. Bevy just wondered why you had the chicken wing, is it a problem from your surgery. You have reminded me how most of us are just dealing with chemo now but on the first you are often still healing too.You do feel better once you have had your first dose because then you can quantify it in your mind and plan what you can and cannot do for the next doses. Keep a diary of the effects on each day to help you plan for future ones
Hugs all round and anyone reading I have not mentioned, join in anytime.
Lily x
Hi everyone
Wow - it was sunny yesterday - well for some of it. Our french student obviously didn’t recognise what the sun was so I had to wrestle the umbrella off him and told him to calm down 
We were on a nice slow day yesterday so gave the teenagers a lie in - not together I might add! A quick re-visit to the land of Tesco then cobble together a picnic in record time and off then to a cricket match - very English, very boring! This was in the village where he will stay next week and we had our ‘picnic’ at the home of his 2nd surrogate parents. I think he may be a bit worried for his safety next week as the girl’s Mum decided to drink for England and was, shall we say, a bit tipsy! She is a lovely lady who I know from the girls’ college so I found it really funny - not sure he did! Another quiet day for me today (hooray) as I’m packing them all off to London (again) for their planned trip to Covent Garden, Camden and Oxford Street. Touchwood it stays a bit brighter. I’m off for lunch with a friend then a walk around our village as part of our Church Festival to have a nose around people’s gardens that are open over this weekend, we can have a good natter so I’m looking forward to doing something for ME this week.
Hope you all can enjoy the weekend, or Le weekend as we now call it, and recovery goes well for those at that stage and anyone coming up to next treatment (is it that time already?) makes the most of the last ‘good’ one. I’m hoping my neuts are good for this time, really don’t want to miss another, but there doesn’t seem any way of telling until the dreaded blood test is done.
Love and hugs to all you lovely ladies
Nicky xx
Hi,
I have posted more fully on the H thread, but as the mouth problem was worse got called into the unit for nadir bloods, which were very good. A quick review of test results showed they found a shadow on my lung in the X ray, which no-one told me and I should have had repeated 4 weeks later ( from early May). They say they are not worried and already have a cat scan booked on Wed, routinely, but a bit hard to totally ignore. Of course I had gone on my own for the first time, so not at my best. What do you think about it? I think I am ok, certainly not upset at this point but I think it has unsettled my confidence that I am being looked after well. Before this I was absolutely certain I was in the best hands possible. Was that naive?
Loved your nice calming post Nicky and glad you are having some time for you. Good luck with the neuts,
Lily x
Lily.
So many things it could be from what I’ve read on here, and I know a simple infection can do it and sometimes it’s just a trick of light I’ve heard. As for unsettled confidence, when I first turned up for my chemo they couldn’t find the results of my heart scan. I had joked the night before about something like that happening and them just going ahead anyway. The nurse then popped back and said “Don’t woory we won’t start until we’re sure you’re good to go”… phew I thought.
They are human beings but they do have checks and balances in place such as the quick review… it all gets done in the end… mostly
Oh and I did have a heart.
Hi
thanks Angie. They also put someone else’s ECG trace in my notes earlier on, and it was only me insisting that I had never had one that made them notice another lady’s name on it! I would really like to get my hand on that bog fat folder with my name on. Once they left me in the room with it for 10 minutes and my hubby was going mad because I kept blowing at it, so the pages flipped over and I could read things. When I asked him to lean on the door while I had a really good look, he said he would leave if I did!!! Goody two shoes.
Lily x
Oooh Lily, use and abuse my knoweldge.
In the UK you have a right to see your medical notes completely free of charge if you’ve had any treatment recently (last 40 days I think) under changes in the freedom of information laws (yes guess who works in this area They won’t take it personally.
If you want to know more let me know and I’ll find out how you do this. Might do it myself later but I’ve been brazen and just said “can I see” and they’re fine about it.
Yee Ha
Our exchange student has been exchanged! He is now at my daughter’s friend’s house for a week. He was very nice and polite but by the end of it I would have been tearing my hair out if I still had enough LOL Soooo nice to get our house back and do nothing instead of ‘entertaining’ and speaking slower English. We are all relieved and not sure if we’d do it again. I think when it’s an organised thing by the school they get to go to school or on trips during the day so the host family doesn’t have to do all that. Unfortunately this wasn’t the case so it’s cost an arm and a leg to visit all the places we did and taken out one of my ‘good’ weeks. However, if my DD gains from the experience it will have been worth it. Off down the pub though a bit later to meet friends - back to normal!
Lily - I did get to nose around some of our village gardens that were open - puts ours to shame! Very interesting exercise as you can suss out the good locations!
Enjoying my freedom and hope you’re all feeling well enough to enjoy the better weather we’re having.
Take care
Nicky xx
is there anyone out there for a chat . Im feeling very low today and need some cheering up please
hi clarins
hope you feeling a little better than when you posted. have you had some sun where you are today, we have so it cheers you a bit, (well on your good days anyway!)
what you feeling cheesed off about.(daft question really!) i am just recovering from 4th fec, which i had on thursday.
somedays are more difficult i must admit, is their anything you feel would cheer you up at present, its hard to find something on our bad days, perhaps we just have to give in and wait for tommorow.
a new day a new begining as they say
. im doing a lot of reading and knitting and texting pals at the moment, hope you find something to will away a few hours.
hope you feel better soon, we are all here for you, take care i will be thinking of you
lorraine
hi nicky 08
just had 4th fec as you know, not too bad so far, just arrived home from sisters and straight back into making cooked dinner and tidying bedrooms, now i know why i escape for a few days (well worth it!)
been out in the sun today, though, it really helps doesnt it?
hope everything goes well, for thursday, and so glad your student as disappeared you need some alone time, or at least not any added pressures, you are so brave.
taking on a french student, and trying to communicate at a time like this, sometimes i cant be bothered to talk never mind talk french,
lily 2000
thanks for your support, not too bad this one, so far anyway, , just getting the indigestion at the moment. not sure which treatment ive got next, but im a bit cheesed of with it all, but we have no choice do we? its not just about us.
so sorry you have more scans to go through, i really hope its positive news, let us know. its so hard sometimes just feels like one thing after another, good job we are here for each other. i like you always dread the scans, the dye or liquid they inject always makes me feel crap. but maybe you will be different.
and i really hope your mouth gets better. ( your having a rough time, im so sorry, hang on in there girl. your a toughie.!
sorry cant reply to all, im having trouble remember what everyone has wrote, but i do wish you all well, and lets all look forward to the day when this is all over.
hugs to everyone. god bless.x
Hi everyone, (funny story for you too Clarins)
Oooh my gosh I tried out the cure for my sore mouth, what wretch thought up something like that? It is steroids mixed in a paste of liquid paraffin and polyethylene resin, amongst the more tasty ingredients. I have to squirt it all over my tongue and any sore sides to my mouth! I very quickly decided no sides were sore enough to require this!!! So just the tongue then hmmmmmmmmm. I have to leave it on overnight, and add more in the mornings and 4 times during the day. Someone has a sense of humour I thought. Convinced myself it could not be as bad as I thought and proceeded. Correct it was not as bad, it was worse. If you imagine trying to relax and sleep with a big dollop of thick lard on your tongue so that every movement makes your tongue stick to any other part of your mouth, you will be close!!! Having said that, the small amount I did not either wipe off or spit out did a good job of healing, before appearing all round my mouth when I woke up.
Well I am sure you have all either grimaced or had a chuckle at this, and I am chuckling about it myself. Not sure I will be repeating it tonight though. It is also used for denture ulcers, so may pass it on to the tank top terror to stick his mouth together. Lorraine I am so thrilled to hear you so much more chirpy, you have been on my mind as you have seemed to be having a tough time recently. Wow you are hurtling through the doses now. Is the next one your new drug? If so perhaps you should find out what it is so you can find out what the side effects are, or maybe it is best not to know! I am anxious about changing after this next one, better the devil I know sort of idea. Nicky hope you have a good week and thank goodness you can get that beaver off your head at home now!!! Angie I had forgotten that, thanks, not sure if brave enough to know everything, will think on it for a bit. Clarins, how are you? we would love you to join in our thread if you can put up with my terrible sense of humour. I now try to laugh at anything, even if like this, it is after the event. Where are you in your treatment? Hugs your way, stay and chat
Lisa, you are on my mind too, how are you? Have you got your appointments yet? I remember you had genetics and gaeny coming up, so I am guesssing you will have decisions to make and more people to see. Enjoy the good week won’t you. Do you change treatments after no 4 or this one. I change after the next one, bit scary.
Hugs all round readers
Lily x
Hi Lorraine
I was going to ask how you are doing? Any worse/better this time? I think my brain plays tricks on me as I think each time is worse but then look back and think it’s better! So overall I think it’s about the same. I hope you are getting close to your good days and can enjoy them. At least the weather is better and it does make a difference. Last week was so bad with our student, umbrellas every time we went out, wet shoes, cold - you name it. At least I didn’t have to speak French as it was his turn to learn English - could not have coped with that and chemo brain Just think you’ve only got 2 to go - fantastic. They seem to come round really quickly don’t they? I’m glad in a way they do as it ticks another one off but dread it as you feel so rubbish. Another wasted weekend is how I see it, which makes the other 2 more precious. The indigestion gets me as well - I think it’s linked to the anti nausea tablets but as I live for each hour I can take them I daren’t give them up too soon - catch 22. I find out my CT scan results on Thurs (even if I don’t get chemo) so I’m hoping they show improvements as the ultrasound did but will still be worried beforehand. Take care and know you’ll be feeling much better in a few days - just as I go down I expect.
Lily - the mouth stuff sounds gross - I think I’d puke! Sorry to hear that you’ve got problems with this though but glad the dreadful gunk seemed to do the trick. My teeth were really hurting yesterday - the back ones - as if my nerves were exposed. All has calmed down today so not sure what all that was about. There’s always something extra to get you down isn’t there? I have so far avoided anti biotics this time round. Last session I had them for a sore tooth just in case anything happened, luckily it didn’t. But my gums are definitely more sensitive this time around, the roof of my mouth also feels ‘ridged’ for most of the time and has only just smoothed out today, all in preparation for No4.
Hope everyone else is doing well, I can’t look back on previous posts as I’ll lose this so have missed a few of you out. Lisa - have you just had another treatment? If so hope you’ll be back on form asap, if not have a good week before the plunge. Clarins - sorry I wasn’t around when you posted yesterday - it often seems quite at the weekend - but I think I saw you on another thread so hope you had the support you needed from this one and the other one.
Take care all
Nicky xx
Heya Ladies.
Lorraine, glad you made it through the weekend, not long until your good week I hope… Why do I think we’ll be looking back on this in years to come and thinking that was my definition of a good week, god I please easily 
Lily… I’m afraid I did laugh sorry, I can just imagine. It’s really hard to ignore stuff in your mouth isn’t it. I switched to aloe vera based toothpaste and mouthwash after the cold sores and ulcers on round 1 and had 0 of each last time so staying on that. The mouthwash does have other ingredients that I know are very effective in it, the kind that your onc would not want you to be taking but as only a small amount would be absorbed into the gums I thought I’d rather than than more steroids etc… judging by what you said I’m sticking with that!
Nicky… Woah girl, a week running around with teenagers, next chemo coming up and I expect you’d be nervous about the scan results. You’re holding it together remarkably well!
Oh yeah… FEC 4 = Done. here comes the steroid rage 
They did use my other arm this time, and a heated bag and it was much much less uncomfortable… arnica at the ready. Still not sure if it’s helping or not.
My Neuts experiment is going well though, in all the hubub of getting back to work and OH’s exhibition I forgot to do the chicken soup and manuka honey thing as my Neuts weren’t too low at the nadir point (1.5) but they haven’t bounced back like last time. I know this isn’t proof or anything but I’m getting back on them this time around and we’ll see.
Lots of love to you all. I’m going to do the curl up on a sofa and doze thing now. didn’t sleep well last night. OH said I was talking in my sleep… “No, not again” apparently. wonder what that was about
hi everyone
hi nicky 08
not quite so bad this time, so i hope yours is the same, but saying that i do feel a bit low with the whole thing,like you say it just doesnt seem much of a gap imbetween the doses. it comes around so quick. i like you try to make the most of the weekends, so its great when the weather is good. i have plenty of wind at the moment though. and indigestion is still problem. is it thursday you go for next one. like you say 4 done, which i was feeling great about but not so much now hes told me i have 4 of the others. still will just have to take one day at a time.
vertangie
hope you feeling a lot better after resting, it does seem to help. have you just had your 4th fec as well, im finding it hard to keep up with everyone.
lily 2000
thanks for your kind thoughts, i am a little better this time thanks. even been out and about after only 4 days cant be too bad. i still have another two fec treatments before what ever they are giving me next, will find out soon what. my oncologist seems to think a little knowledge at a time is a good thing, and i think he may be right., sorry to hear your mouth is so sore, i dont seem to have had that only a few mouth ulcers, and i havnt been using mouthwash as much this time, maybe id better!
anyway anyone i not mentioned try and get a few good moments for yourself, phone a good friend, stick with positive people (easier said than done at times) and remember we will get through this one day at a time.
big huggggggggggggggg!
Hi
You all sound pretty chirpy to me, which is good because I am back on the big feast. I live not too far from the famous Wilkins jam factory in Tiptree, best known for its strawberry jam. Anyway hubby was off for a dental appointment so we went over to test their strawberry teas today. Yuuuuuuuuummmm. Warm sugar crusted fresh baked scones with butter, famous strawberry jam and ooodles of clotted cream. I had 2 just to make sure! It was heaven. In the afternoon we went to Maldon which is a old market town, which the estuary winds through so lots of boats to look at. Sat on the wall and we all ate 99s in the sun, almost seemed like a normal year for a while there. Tomorrow we are going to sit by the sea (well mud usually) at Southend and hopefully find the sea breeze I am yearning for, sound of the seagulls, sharp stones on your feet. It is famous for the Rossi white soft ice cream, so we will def be testing that and the hot doughnuts a few times. Do you see a pattern to my trips? I am going to be so fat , fatter would be a more realistic picture. Well I will think about that one later, much later. Does anyone else feel the need to treat themself??
Lorraine - One good thing I can recommend is that they changed me from ranitidine tablets to omeprazole tablets, and although I am not usually keen on plastic capules, they are much stronger and really sorting the problem out for long periods of time. I will wait to see how they cope with my next dose, as acid and the mouth are my worst things. You have done well to be out so soon. Nicky lots of luck with your results and hope that you can get the next dose completed too. Are you taking it easy as you have been very busy?My mouth has only just got better too and I get my next dose on Tuesday week, bit worried about it, still I have the lardy tongue if all else fails! My cat scan is this Wed unfortunately. Angie, I don’t mind you laughing, I did myself but afterwards, crikey it was so hard to try to go to sleep and ignore it! Have you overtaken me? Are you on an accelerated treatment or have I gone madder than usual? Anyway well done for getting no 4 done and hope it is soon out of your system. Clarins well done for going out alone, Nicky has road tested wigs at 60 mph in a sports car and it stayed on!!! Keep taking little steps and don’t look too far ahead, that is how I battled through the obstacle race of procedures to where I am and will keep doing so until someone shouts stop, have a break.
Hugs all round and hoping for sun tomorrow
Lily x
THink the FEC got to me, it was 3 today not 4. I’ve still got 3 to go… rats, wishful thinking but still half way so that’s OK
Night night everyone. Enjoy the sea tomorrow Lily.
A
Sorry Angie,
should have kept quiet
Lily x
Lily - I forbid you to go out and have cream teas and ice cream - you are making my mouth water - but maybe that’s a good thing So glad you got out and had a good day - it’s exactly what I want to to do, hence the Brighton trip in a couple of weeks. Sea breeze, all that lovely ozone which builds up your appetite, fresh do-nuts - yum! Can’t wait. Hope Southend is nice today - tell us what foods grabbed your fancy,
Angie - take it easy. Interesting to hear about the neuts. Mine hadn’t picked up hugely last time even with the extra week so I’m not sure what state they’ll be in this time round either. If they’re low I think it will be the Manuka and chicken soup diet for me, but not mixed together - yuk! I had Manuka the 1st time round and neuts were better than before chemo so maybe there is some truth in it’s powers. Still have a jar of the £10 honey at home so maybe I’d better use my investment!
Lorraine - you do sound chirpier - a good sign I hope as this cr@p does get you down. Make the most of the good days and hope they arrive sooner rather than later. When is your appt with onc to tell you the next stage of treatment? Shame he’s not told you before as you could go armed with questions from experiences on here if you needed to. At least it should still be half way for you chemo-wise which is still a good thing.
Take care all of you and anyone I’ve not mentioned. Good luck with scan tomorrow Lily, don’t drop your trousers too early
Nicky xx
Nicky: I wouldn’t eat them at the same time LOL, yuk indeed. I do the manuka at the start of the day. I think the in laws visit had a large part to play in the neuts not recovering as it was a pretty stressful weekend.
Am making the most of my steroids to type like the wind… how fast can I build 2 new websites… ready steady… go (better than letting the steroids make me angry
Lots and lots of love ladies.
Angie