oh lordy, I am due to start EPI-CMF on Monday, very nervous as I am TOTALLY vomit phobic (they can shove anti -emetics in every orifice for me as long as I don’t throw up) Apparently those ladies who drink alcohol - i.e me , are sometimes a little more immune to the side effects …here’s hoping
Am thinking of asking for anti emetics before the treatment - yes I am that wussy
Wish me luck
Sam x
Hi all,
I was abducted for 4 days without access to a computer, so sorry not been on for a while. My payback came Lily - severe di on Monday, slightly feverish on Tue and Wed morn so I rang hospital and they arranged a blood test that pm. Had to wait for results and my neutrophils were only 0.1, so they admitted me straight into hospital for iv antibiotics and neutropen injections. I escaped yesterday and am feeling okish now, still tired but at least my temp has stabilised. The onc thinks it was a longstanding infection after looking at my previous bloods … I didn’t dare tell him about my Friday curry 
I’m still glad I went out as I needed the mental stimulation, and a taste of what the real world is like, but I reckon I’m gonna keep away from crowds big time until well after my last CMF on 16th Dec.
Carol - yes my taste has changed for CMF - it’s a weird side effect init. Sounds like you’re having a rough time at the mo 
Carmel - like you I found day 5 and 6 the worst on Epi and I took about 10 days in all to feel like me. I had my lowest point after the 2nd Epi - kept crying and felt like stopping it all. Keep counting down the Epi’s … they do end!
Lily I hope the last CMF goes well for you … next week? You seem to be having all sorts of different side effects on CMF than I am. I have trouble remembering when to take tabs, but my daughter taught me how to put them in the calender on my mobile phone … much easier.
Good luck to Mivvi and Nettie on 2nd epi, and last one for you Jackie!
Sam - good luck with your first Epi on Monday. The sickness really varies from person to person. I have only had nausea, but I know some who vomit lots. Keep off alcohol before and after as it can really make the side effects worse and make sure you have a good hearty meal just before, as it lines your stomach. You will be given lots of support for sickness, as well as lots of tablets, so don’t worry. It’s a journey we all didn’t want to take, but it is bearable!
Big hugs to all,
Shelagh xx
Hi,
Jackie that is such a lovely thing to say to me, thank you. I just hope you don’t get every side effect that I had. I am not a good person to twin with!! Hope you continue to keep your chin up over the top and fare well on the next stage. Well done for getting so far.
Sam, well I have been on chemo for 181 days with 15 to go till the end. I have not been sick once or even felt sick really. I am not on my own with this, a lot is about keeping calm on the day and eating well to line your stomach beforehand. The rest is down to luck and your constitution but can still be controlled with the army of drugs they have available. I get terrible acid coming up my throat and mouth trouble but no Hughie Green!!! They put iv anti sickness in you before the drugs to stop it. Most people have this controlled really well, wishing you luck and big hugs for next week. I am in on Tuesday of next week. By then yours will all be done and you will feel better for having one done. Shelagh, poor you to have to go in, you must have felt terrible. My neuts stay high so even when I have felt grim, I get sent on my way. I refuse to have extra blood taken now as pointless. I take chances too and mostly you get away with them but be careful now you know your neuts go very low. It is not too long to be careful, thankfully. Your last is really close to Christmas, so don’t chance getting it delayed by a week, that would be horrible. The injections should have sent you back up into high figures though. I have the Cyclophosphamide iv so all done on the one day. My stomach would definitely not have taken tablets, it is a cesspit most of the time. Carol I relly hope you are on your way up the ladder and will be grinning at the top in time to see us take a nose dive back down again. Just think, every time that is one more thing ticked off your get better list. Some parts go really slow and then you suddenly realise just how far you have come already. Keep chugging along x. Carmel, Mivvi, Nettie - lots of hugs for the next one and hope you are ok, my brain has totally gone on dates of people and I will lose the post if I turn back a page to check. Sorry if I forgot anyone and hope you are ok
Lily x
Now Iv found this thread to post on I feel loads better… like i know what is going on for you all at last. Being fairly new to the site (only found it after starting chemo rather than at diagnosis/surgery over summer) i found all the different threads a bit confusing. Just got up to speed and it sounds like you are all doing a bit better. Even Carol - I imagine like me you are finally feeling better. A few of you have corroborated on the second Epi being particularly grim ( sorry Sam if that scares you…) so I PRAYING i will have better luck next time like you ladies did. Shelagh its reassuring to know that your day 5/6 were worse too and that it took you ten days to feel better… Maybe I was hoping for too much too soon. I’m still a bit jaded today but sooo much better. I drove for first time in eleven days… I have my two children home with me now. girl 10 boy 5 and we just cuddled alot on sat and sun as they both missed me loads. Mutual of course but i know i couldn’t have looked after them this time as i was so unwell. They had a ball of course while they were away but are glad to be home. Neither of them seem phased by hair loss, my little boy just kept on stroking my skin and telling me how soft it is… he’s such a cuddle. My daughter was a star while they were away looking out for him etc…
When you talk about the low neuraphils etc… I’m a bit lacking in knowledge so please excuse the silly Q’s Mine were low apparently (1) which was the cut off for me to have my second chemo. When you talk about being careful or taking chances/ being sensible -what kinds of risks do you mean?. I was told to keep away from sources of infection days 5-13 but after that I sort of did normal things… is that a bit foolish? Id be interested in what others think … Iv decided that very regular hand washing is a simple precaution i can take without feeling like this thing is ruling me which is probably a very effective measure, given most stuff is picked up hand to mouth… I’m not a great worrier so maybe I’m in danger of being too laissez faire - comments please.
On a brighter note, we’ve booked Christmas at a local hotel ( ten min walk through the park) for family, my mum and dad and mother in law… What were we ever thinking about doing Christmas ourselves in the past anyway!!! This is just the best plan… no cooking and no clearing up!!!
AND I’m going on over night trip to York to do some shopping (and eating) this weekend with school mums. Should be a blast!!
TWO EPI’s done hurray… Thanks for all the support and encouragement. Good luck for Mon Sam. Hope you doing ok Jackie… I’m so impressed that you’ve done them all. Xeloda for you?
xxxxcarmel
Hi ladies - I’m back!! I know I will lose the post if I scroll back to read all your comments - but just to let you know you have kept me going! Thank you!! Lily - you’re an inspiration - I’m going to focus on your countdown as mine stretches too far into the distance!! (Note to self - think positive, i have done 2 epis!!). Sam, good luck - it will be worth doing, don’t be scared, these ladies are brilliant and it’s always great to know there’s someone out there who can help with the side effects. It’s the strangest feeling in the world when something can feel so bad when you know it’s doing you good … One of the things I have struggled with is feeling like a spectator on the world. Are any of you working? (I know I’ve asked before but brain’s full of cotton wool at the mo)
Carmel - how are you doing? I’m with you on the neuts - when they go low is there anything you can do to bring them up again? Just don’t want any of this to be delayed!! I was told to eat a “pregnancy” diet - avoiding blue & soft cheese, raw eggs etc Actually the thought of those at this time of the morning makes me want to vom anyway!! Your children sound fab - my lads are considerably older but still happy to hug! Have felt very weepy this time - all part and parcel I s’pose.
Great idea booking in somewhere for Xmas - I ususally leave everything to the last minute ( and I expect this year will be no exception. My postie has asked me to stop Amazon shopping - but the internet must be the answer to skipping shoppers’ bugs.
Hope no-one else gets abducted - look after yourselves ladies!!
xx
great post Carol… so glad you are feeling better. Your comments sum up my feelings exactly… there is obviously lots of parallel living to be done while we are all doing this chemo treatment!!
Im about to get stuck into internet shopping too… have done all the pressies this way before when kids younger but def have good excuse this year. Iv often found debenhams to be quite good as they tend to have local people who deliver and then deal with returns when you ring them direct to arrange a time for pick up… just a thought.
No one else has been on for a few days… hope you are all ok out there… hanging in there or better still enjoying life a bit.
xxx carmel
Hi all, I’m feeling much more like me so am hoping the blood test I went for this morning will come back with much more positive results. I really don’t want my chemo next tue to be delayed!
Carmel: I had never heard of neutrophils before chemo but I gather they are just a type of white blood cell that is particularly affected by chemo in some people. Mine were around 3.00 before I started chemo, but often have been as low as 1.31 and I still had chemo - though I was warned to be especially careful about infection and crowds. I get confused about how long you have to be careful for. My understanding is that your ability to make white blood cells is compromised by chemo for 5-10 days, so the neutrophils you have before chemo have to last until you can make them again. If you get an infection you will use them up and then get neutropenic sepsis … which is what I had. If you don’t catch it early it can become septacaemia - which is blood poisoning I think and very serious! My advice to all is to keep taking your temperature and watch out for a sustained slightly raised temp as well as a high one.
I hope your last (?) chemo went ok yesterday Lily, and that your first epi was ok Sam. I tried to be normal on the last weekend before the next epi … it kept me sane, and I think should be ok if you haven’t had any other problems. I was going to do some ‘normal’ christmas shopping last week, but am gonna hit the internet sites instead now!!
Big hugs to all, Shelagh x
Hi everyone,
On second week of 2nd epi, 3rd next mon. Thankfully no sickness, just a sore mouth/throat. More tired this time, have power naps throughout the day. Trying to be as normal as possible going out with friends etc. Going to kings lynn,to visit brother in law at the weekend, how can i store up enough energy for then?
Lily im glad your hair is back, did the dye go on ok? I have to agree with carol you have been an inspiration, I have read many of your past threads, I hope you’re not gonna leave us when you’re done!
Jackie, well done on number 4, I’m catching you up! Im on CMF next on 1st and 8th day not sure if three or four weeks, will ask on Mon.
Sam take each day one by one they soon mount up. All side effects are doable, especially with all the tips and advice, reading these threads do help when you have a bad day.
Shelagh, sorry to hear of your hospital visit, septacaemia sounds scary, thankfully the doctors are ready for us!
Take care everyone, happy shopping!
Enjoy the rest of the week x x x
Hi everyone,
well I tested my new hair do on my BC friends at lunch today and they were very complimentary - either that or they are being very kind!!! It is very short but gives me a good chuckle when I catch sight of myself in a mirror, I almost think it is someone else.LOL Anyway I am making the most of the last days before I go down the dark hole again on Tuesday, so that emans lots of eating yummy things this week and the trots next week to shift the calories!!
Carol you sound great, log that thought in your head for next time. Then you can think I will be better on ?day. It always helped me, so I didn’t lose the plot.Thanks for joining my countdown, 183 days done and 13 to go. I can still picture myself on epi 2, I think I cried a lot on that one but felt better, strangely. Have fun till the next one.
Mivvi, we are on the same week then, i go next Tuesday. Watch the sore mouth, try Difflam after every time you eat and before bed. Also thrush causes a sore mouth so it hurts to even hold a hot drink near you mouth, you need tablets if you think you might have that. Hope it improves, I found squirting cold water out of a bottle from the fridge helped, also lollies. Thanks I won’t disappear too quickly, I have to moan about surgery and rads yet!! Re the journey I would take a pillow and sleep both ways on the journey.Hope you have a nice time there.
Carmel - the neuts show what your immune system is like, so whejher you could fight any infection off or not. Although they say they drop after a week, I think mine go down fast about day 4, which is when all my side effects start. I have been tested loads of times mid-dose when i have got something wrong. They always check your blood and mine is always ok. On dose 10, which was day8 after the first one,mine were 5.8. I am really surprise that they are going up on CMF, seriously weird. If they get low you either have a week off or get injections to boost it. Many people swear by eating mushrooms and manuka honey to boost them. I have not had either but rest a lot in the early days and eat lots of eggs, fish and meat. Just don’t take any supplements while on chemo. Hand washing helps a lot. I have a litle bottle of anti bac like in the hospitals, in my bag. Also avoid placeswith small children, a joke if you have them at home! I am a teacher and cannot go into school at all.I don’t let anyone round who has a cold and move away from anyone who appears ill or sneezing when out. The rest is down to luck really.
Lala - hope your bloods are ok this time and you get the next one done. If you are low again, nag for the injections as they really make them zoom up. Good luck for the next dose too. I am internet shopping too for Scooby Doo toys for my Grandson!
Lily x
Me and you next Tue then Lily!
Hi Mivvi I always open a Word doc and do my posting on there, that way you can flip backwards and forewards between the BCC site and Word and not lose what you have typed. Just select all on Word, hit copy, then go back to BCC and paste it in - easy peasy!
Carmel: I took every precaution for the first epi but as I was feeling Ok became more cavalier with the rest. As I keep saying, I have been very lucky – my onc says it is my positive attitude – asked if that was a euphemism for bloody minded – he just laughed!!
Lily: forgot to say earlier today – lucky you with proper hair. I just have black fluff and still a shiny top – but we are getting there. Had to shave legs for second time this weekend. I keep saying it has been so good having you holding my hand thru this and we are on the last leg – chemo on Tuesday next and Tuesday after that, THEN WE ARE DONE!!! Ok other horrors to cope with but we are out of this.
Sam: you will be fine on Monday, just let us know how it goes.
LOL
Julia
Thanks for the reassurance re taking precautions etc… really helpful and has given me lots to think about. Great to hear about hair returning… Im still at point where im building up courage to go out wearing a wig!! possibly this weekend. Feeling a bit better each day now, despite still having sniffles but feel a bit cheated this time, having lost such alot of my precious ‘out of dark hole’ time to a bug. Bloods on Tues, but a lovely weekend lined up in the mean time. Ill post next week on my return. Hope you all ok this weekend and that Sam you manage to stay calmish before you begin on mon. Let us know how you get on.
xxx Carmel.
Hi
Have had a strange few days - just when I thought I was feeling better got very tired and weepy - this 2nd epi is weird!! Carmel I’m with you - still wear a buff over my wig on windy days!! Poor you missing some of the ‘good times’ this cycle - hope you have a fab weekend wherever you may be!!
Likewise to all you lovely ladies - have a good weekend
xx
Hi,
well for the first time ever, I am raring to go and get the next one in on Tuesday. I can’t believe such a thought came out of my head, what a weirdo! When I think about it, the middle section of chemo was probably the hardest to keep cheerful through. Mainly as the second half of E/CMF is 8 visits and the 28 day cycle slows down your progress. The end part is good on optimism but the Se do accumulate a bit. Not that CMF could touch epi for glueing me to the sofa. Epi did make me cry quite few times, but CMF does not. CMF has annoyed me by dictating what I can and can’t eat and that effect stretches longer into the cycle each time. I would say that as soon as I stopped epi I felt like myself again and have had no days on the sofa at all, quite a lot of time in the loo!!! Anyway you all hang in there and focus on good days, don’t even think about the next one until you really have to!! If Julia and I can do this, so can all of you and give yourself the best possible chance of still sailing into the sunset with all these dreams BC tried to snatch away.
Hugs to you all. Enjoy the weekend and to all of those diving back down that dark hole this week, hope it goes as well as possible, quick vein finding and no bugs. Holding your cyber hand as we all jump in once more
Lily x
Hi
Well this weekend has been as expected, very quiet. S/es have followed the same as the previous 3 epis. My middle weekends have all been pretty much a wipeout. No specific feelings apart from the fact that I’ve had no energy or inclination to do anything. I’ve definitely been a couch potato this time. Anyway hopefully that will be a thing of the past as I move on to cmf next week all being well.
Lily good luck with your 11th chemo on Tuesday, good for you girl, then only one more to go.
Hope you had a good weekend Carol and Carmel, you’ll soon be catching me up and overtaking me.
Love to everyone else and hope next week is good to all of you.
Jackie xx
started the Epi today, feeling OK so far, wearing my anti seasickness bands and drinking ginger ale. Soooooooo hoping I’ll be OK. My wee is a great shade too LOL
Hi all,
Well done Sam, that’s the scary bit over, now just look after yourself keeping away from any bugs and listen to what your body needs.
I’ve just had no 3 epi, knocking them off quite quick. Weekend away was great, slept for an hour or so when the boys went to watch the football, could cope with meal out and put the world to right until the early hours. Thanks for advice lily.
Good luck for tomorrow, how i wish i was that far down the road.
Julia thnx for advice for word doc will do that, forgot this time, hope i don’t lose this!
Take care everyone x x x.
Hi all,
Not been on for a few days as my girls were home for the weekend … I got to cook lots of meals and they gave me lots of hugs! I’m back down the CMF abyss tomorrow. Not really looking forward to it - I hope my S/E don’t get worse like yours did Lily, and I hope I don’t get low neutrophils again. I hope all epi endurers are doing well - carolj, nettiespahetti, jackiek55, gabba, carmel, mivvi and especially bueller who started today Also CMF peeps hope you are doing well too - brut56, curtainqueen and Lily. Hope I haven’t missed anyone.
I got a couple of Buff headware thingies this week, direct from the website. They are sooooooo comfy and warm. Defo recommend them.
Shelagh x
Hi again,
Forgot to mention i got my knuckles wrapped today for not taking my temperature everyday. The nurse said temp may be only sign of an infection, by the time symptoms occur may be too late. x x x
Hi
Just to say good luck to Lily for tomorrow - go girl!! - and to anyone who’s back down the tunnel today. I’m thinking of you loads - also I’m now out of sync cos I feel normal for the first time today since last epi 10 days ago. Long may it last!!! Sam - hope you manage to get rid of the beetroot wee quickly and heaps of hugs for your first time (now you’re only one behind me!!)
xxxx