Hi,
well I had my first CMF today, had a bit of a problem which I will tell you about later but home that morning and feeling well so far. Hope it lasts. I have to start a vitamin B supplement from tomorrow as Methotrexate is particularly hard on the mouth and they know I already have problems there. Neuts were up to a stomping 5.8, my friend said but mine were not even that high before I started! I have no idea I guess it is just part of your make up and constitution. Hopefully that means that they should stay up for the second dose. It was so nice not having the cold cap.
Came home and discovered that my lovely Mother in Law had died.She got her wish to die in her sleep at home, peacefully so I think we have a lot to be thankful for. My BIL was kind enough to cope and not tell me before I went, not sure I could have coped if I had known.I have been phoning people all day as I feel fine now but not sure about tomorrow, hopefully not too manic on the steroids but need to keep busy.
Hope you are all ok and I will move on after this post as we have to keep believing and moving forwards hopefully.
Lily x
Aw lily
hunni iam so sorry for your loss I really dont know what to say but you know were all thinking of you and our prayers are with you and your family just now.
joanne
Hi Joanne,
thanks for that, I have had a few cries and feel ok, it was the best thing for her. Just want to wish you luck for tomorrow, I was anxious but it was fine, had 5 tubes instead of 3 but the M is really tiny and even the other 4 are not big fat tubes like the epi. Hope you continue your good luck but take something home with you just in case it is different. I can feel the first drug starting now, 12 hours later and I don’t usually react until Friday, so hope it goes quicker.
Big hug for tomorrow
Lily x
thanks lily
Tell me your not starting to feel sick iam dreading tomorrow the unknown again.
Good news today pain in my bones are being put down to old age (48) although I would rather have had scan to make sure but as usual onc was to busy to see me and nurse had to tell me. getting really sick of being ignored thought you were supposed to be ;looked after on this b loody trial.
joanne
Heya ladies.
Just thought I’d touch base. not ignoring you all honest just had a few low days, kicked myself into action and have been very hard at work trying to catch up.
Lily. Glad MIL passed peacefully, so sad that it was to be her destiny though. I imagine you’re on a right old emotional roller coaster right now.
the C and the F in CMF are the same as the F and C in fec, I was told at the start that it’s the epi that’s a big one for side effects, so you may find it’s not so bad at all (fingers actually crossed for you here).
I went down the pub for the first time in nearly a month (it is next door BTW) and saw all my friends in the village. I really look like a chemo patient now, the eye brows are mostly gone and my skin is really prone to being dry and cracked, lip balm has become an hourly thing.
But it was so great to see them and it was just the locals (I don’t like to scare the families who are on their hols but I’m also not going to put a disguise on if you know what I mean)
We were chatting frankly about what’s going on and my friend who’s ex died from BC a couple of months ago was really trying to convince me it’s not my fate which is so sweet, his ex wife did not get the best of treatment but I think she also left it a while before going to see the doc and it had already spread a lot.
But they did actually manage to convince me that we are all really quite amazing, when you actually tell people what we have to go through every 3 weeks they’re in awe. It’s not that we’re brave for dealing with cancer. We’re brave to turn up for treatment and not lash out, we know we can do it but it’s too easy to just pretend like it’s no big thang when it really is.
So to my amazing BC sisters on this thread… you’re amazing… all of you.
Right I have to be back at work at a decent hour, website launch day, no pressure there’s only like 3000 different people looking at it every day… gulp 
Good job it’s my good week.
Oh yeah round 5 for me is day after bank holiday. Good luck tomorrow Joanne and I hope you have a restful night Lily but any emotion you feel right now is totally understandable, this is the really hard stuff to deal with and it does take time, hugs whenever you need one. I have this strong memory when my grandad died that for some reason I had to get to the sea and it really helped me. Breathe deep.
Lots and lots of love to you all.
Angie
woah that was long… sorry.
Lily - So sorry that you MiL has passed away but I hope it was as peaceful and relatively painless as possible, it sounds like she got her final wishes which must be the most important thing to remember. This will obviously affect you a lot so please use us as a sounding board if you are feeling particularly low, which happens anyway after chemo and know that all your cyber buddies are supporting you at this very difficult time. Take good care of yourself, hubby and family and draw strength from the fact that she was well loved and had a fantastic Daughter in Law. Rest up after chemo and hope the side effects are minimal - bet you’re glad to be off the Epi - can’t wait not to see the big red guns;-)
Angie - you got it right. We are brave but only because we want to be and need to be and I think we deserve to say it to ourselves. I know on other threads people get p*ssed off when called ‘brave’ but, hell, we ARE! I also am quite happy to be told I look good, especially after 5 bl**dy FECs! It is nice just to meet up with friends like you did, I love the ‘normality’ of it as mine know what I’m going through (well, think they know!) and we can talk about everything other than me and BC. I prefer it to any organised thing at thee moment. Good luck with your website launch, hope chemo brain didn’t interfere and all goes well 
Lorraine - you always sum up my thoughts as well. We’re both in the same boat but not as badly off as some, for which I count my blessings. As I’ve said before, after my 1st dx I have intended (and have) to enjoy ‘the moment’ and have no regrets and once the bl**dy chemo is over I’m going to carry on doing just that Take care with treatment this week (I think?)
Joanne - really hope there’s no problems this week, it must be so scary after last time but I guess you’ll be checked a bit more? Take care and look after yourself.
To all and everyone, hope your day is better than yesterday and not as good as tomorrow (but I’m not sure if that makes sense!)
Nicky xx
Thanks everyone
Words of wisdom again just about to leave for my chemo hopefully will go ok. Had strangest day yesterday at hospital with nurse but will tell you about that when i come on tonight. Lets just say someone screwed up again.
Joanne
hi everyone
Lily 2000
So sorry about mother in law, but like nicky said she was lucky to have your support. you may find you feel very vunrable at the moment, please let it out to us.
like i said earlier on, it really effected me when a lady who i knew from the hospital died last friday, ( and i wasnt even emotionally attached to her) so my thoughts and prayers are with you.
Nicky 08
im due another one tommorow, (urghhhhhhhhh
hhhhhhhhhhhhhhhhhh!)
im not going to lie i hate it HATE IT HATE IT! there now i feel better. (well till tommorow anyway)
my husband and family are anxious because they havnt organised scans like they were supposed to. so they could tell me next course of action. But i must admit i couldnt be bothered to chase it up… i will ask tommorow though.
Been for a lovely day out today, so i need to do just a few jobs before tommorow, (not too many though) no time for housework much now, better things to do with time like you said its good to meet up with friends, and it is nice when they say you look well (at least you know, everyone cant tell whats the matter) and you dont have to talk about it all the time.
everyone else, hope your keeping your chins up, if not never mind youll soon come to your good days, just ride through it.
all the best x
Hi everyone,
thank you so much for your lovely thoughts and I am ok. She got her wish and it was getting harder to watch her so I think I am dealing with this well, until the funeral. I am hopeless, even getting distraught when I don’t know the person well and really hate being in the front row where you see everything. She is going in my FIL’s grave so that has to be opened again, from only last year. OH trying to be a rock and planning to read the eulogy as he did for his Dad. So I am just being very calm for him so i don’t add to his worries and stress.
I deliberately did not mention the ‘little problem’ at my first CMF as I was anxious not to worry Joanne who was going in the day after me. I am sure you will be fine Jo. It was going really well and they were down to the last 5 mls of the final 5th tube when I started to get this stinging in my nose. This was no surprise as I had been warned it makes you nasely. This got worse, then my nose felt 3 times bigger than normal, then it started to really hurt and sting and then I got a bad headache. I could not breathe through my nose next and I felt really dizzy and then realised I was going to faint so they stopped the treatment. They got some advice and left me for a while until the effects wore off, then really slowly injected the rest in and it was fine. I had to stay for another bag of saline to go in and then was allowed to go home. They are confident that it is because it is going straight into my heart through the port and that if they double my fluids and administer it by drip, I will be fine on Tuesday. No worries then. Ha ha. Will really be looking forward to going back! Perhaps they will lower my dose now. The excellent news is no side effects so far - hooray. Hope to be as well tomorrow but lots of tablets to take. I have 4 steroids in one go this time so tigger bouncy for hours!!!
Lots of luck tomorrow Lorraine and hope everyone else is well, esppecially Joanne and Julia with their CMF. Angie glad to hear you are coming up it is that rotten epi, it used to do that to me, I can feel a difference already not having it this time. Nicky any idea when the programme will be and can I have an autograph!!
Love to you all
Lily x
Hi lily
Now you tell me lol
Wasnt to bad till half way through first dose it was the C that did it for me felt really unwell head was muddy and felt sick but stayed little while longer till I felt well enough to drive home. OH was going mental because I was on my own again, Came home and went straight to bed felt unwell all night and total shock I was sick. Do you know you cant take ibrufen or paracetamol for 48 hours before and after while on this as it increases your doseage level almost double so be careful. it’s a pain for me as i have severe pain in my back and hips just now so hobbling about like an old woman and kids keep asking me whats wrong as I havent told them about possible spread to bones just been telling them that its side effect of chemo but think they know somethings wrong. did you get folonic acid to take 24 hours after you chemo to avoid sore mouth and watch for blood in your urine as this is a side effect too. You know me ask to many questions lol.
Joanne
Hi Joanne,
you didn’t seriously want to know that before you went in did you??? Thought I might scare the pants off you. I feel like running for the hills before next week do you? It must be more of a shock to you, as you have been so well up to now. I have not even felt sick but got some heartburn 12 hours after the dose, but given new expensive tablets that taste of strawbery milkshake so happy to get them. It was the cyclophosphamide that got me too but they gave me that last fortunately. Otherwise I might have run off!! You shouldn’t go for a new drug on your own. Oh sounds really kind and obviously wants to be part of this. Why don’t you let him help, it will make you closer. Too independent eehh! Shocked about the painkiller part, no-one warned me but I usually call the research manager if any problems as we have a 24 hour number to call, even Christmas Day. I have anti sickneess tablets twice a day, 4 steroids together each morning for 2 days, 2 weeks of thrush tablets just in case, anti biotics juat in case and supplements to take from 24 hours after the dose. My tongue improves every time I take one. I fel much better than on epi so far, hope you are good tomorrow. Sorry to hear about bone pains, are you going to have a scan? You must follow it up.
I wonder how Julia got on with her CMF yesterday.
Love to everyone else on this thread
Lily x
Lorraine - hooray last FEC! Just over the effects of my last one so willing you on and hope you’re not too bad. Plus, as you’re my guinea pig I need to know what to expect - how selfish can a girl be? Really hope it goes OK and you get some answers about scans and follow on treatments. I have a long list of questions for my onc for the next (and last) time and she is very good at giving you as long as you like to talk - really pi**es off other patients I’m sure but hey ho - we need answers. I also know how you hate, hate, hate, hate it!! If I didn’t see the inside of the chemo ward ever again I would be so happy - however that’s not an option as I’ll be still going every 4 weeks to get my biphosphonates done - just hope the association with nausea stops. Glad you had a good few days before this one - it does help to know there is a ‘normal’ time as well as a cr@p time. Take care and rest up and watch for the return of the H
Lily - so glad you’re effects aren’t as bad but what a scarey time with your chemo? They certainly know how to scare the pants of all of you on CMF don’t they? Hopefully after the 1st one, as with Joanne, things aren’t as bad 2nd time around. Really don’t envy you going back so soon for next one but deal with that next week and enjoy not feeling so yuk. All the pills and potions sound great - mmmm strawberry milkshake now there’s an idea! Take it easy and hope you and the family are bearing up OK under the circumstances. Do let us know when MiL’s funeral is so we can have a moment to support you and give you some cyber strength.
Joanne - hope you get over the worst as soon as possible. Poor you, sounds an awful ‘experience’ so far. Also really hope your aches and pains are nothing other than a reaction to chemo and all that brings. Take care and hope you feel better quickly.
To all I’ve not mentioned, hope you day is good.
Some general chit chat now! Youngest daughter is at Reading Festival having got early entry yesterday - boy did I love driving around Reading for ages getting the right entrance. It doesn’t even start till Friday! A night under canvas (well, a pop up Cheetah print tent to be exact!) should sort her out! I’m sure I’ll get a call today to pick her up and come home for a shower - she’s very high maintenance - not a bit like her dear Ma;-) Talking of HM I have heard and read all the requests from my fans about my appearance. Well, lovies, I think Sky are doing a series of programmes about funding in the NHS and it covers, cancer, cardio and other areas with a programme for each. This is around the 5th Sept so I’m waiting for my Sky guide at the end of this month to see when they might be on, then I can let you know. I have no idea if they will use our shots but if they do I’m sure it will be sort of background filming. Will let you know more. If it is then I for one won’t be watching as I would have (hopefully) just had my 6th FEC so will be feeling like sh*t and will not need reminding of what has made me feel like it! That’s all the news from the stars for now, hope you all have a good day.
Nicky xx
ps thank goodness I ‘Copied’ this 1st as I got timed out again and lost this!
Hi Everyone: Heavens - catching up with all these posts after six days is like trying to read five novels at a time! Forgive me if I concentrate on Lily but you all know I am thinking about you - I always feel guilty that so far (I know it is dangerous saying this!) but I have had nothing like the problems some of you gals have had.
Lily: first, I am so sorry about your Ma in Law. My mum died four years ago having had advanced dimentia and parkinsons and finally pneumonia. Although her latter years were not good, it was still terrible for my sister and me when she finally went. No amount of kind words can make any difference to how you feel but at least you know we are all thinking about you.
Had the CMF on Tuesday, which was OK - in and out in 35mins! I had one lot of steriods by IV and one little tube of mex - the yellow one. I have the C thingy three tablets per day for 14 days and guess I go back for the F brain dead one next week. They gave me Calcium Folinate - four tabs, one every six hours starting 24 hrs after Mex. I haven’t been given any anti- sickness but have some left from previous prescriptions. I didn’t know about the paracetymol and ibuprofen either. It is fascinating how we are all told different things. Was a bit concerned my neuts were down to 1.9 I usually stick about 2.3. I always get a copy of the blood report so that I can keep a check on how they are going.
SO far as the hormones are concerned, I have been threatened with Tamoxifen which I thought was for pre-menopause women and I am eight years post menopause - looks like another row coming up there then!
I have a copy of my path report - it does make interesting reading and at least you can do some research so when they talk to you about future treatment you don’t just nod!
I will read thru all your posts again when I have more time, but we all keep plodding along and hoping for the best. I say “So far so good” so many times that I am thinking about having it tatooed on my forehead. I shouldn’t joke, I am just so lucky.
Oh, news on the hair front: Had to shave the bottom three inches of my legs about two weeks ago and I have a 3" patch of stubble on one! Let’s hope it is going to start a trend.
Love to all, keep fighting the fight and we must keep making each other larf!!!
LOL
Julia
Phew - lots of posts!
Lily so sorry about your MIL. Hope the funeral goes okay if you are still twinnin it like me awful at funerals. When it was my husbands held it together as knew everyone was looking, when it was MIL few months later, same church, same service and FIL asked me to walk in with him totally lost it, but lease you know she’s not suffering anymore. So glad the chemo effects (well after the problem!!! Yuk), hasnt had too many side effects - long may it continue.
Hope all well, its sunny today and Im back in work, well for a few hours!!
xx
Hi Everyone
Just catching up with the threads…soooooo much to read and take in!!!
Lily - So sorry to hear about your MIL, but like you said. She got her wish and passed in her sleep peacefully. My thoughts and preys are with you and your family. xx
Hope everyone else is okay and big ((((((((HUGS)))))))) to who needs them
Kirsty xx
sooo much going on here.
Lily glad you’re keeping it together, s’alright to fall apart a bit you know. Hopefully the funeral will allow you to shed some of this cancer bagage we all seem to have to carry around now (I’m inclined to leave it the recycling next week myself).
My veins were hurting so much last night it had me in tears trying to massage them it’s rolling up sleeves that pulls the skin and makes me wince. Anyway OH was in bath I thought but he caught me sobbing like a baby and told me I didn’t have to hide it bless.
Anyway launched the website and almost everyone’s happy so hurrah. Lots of good news at work today actually so everyone’s really chuffed.
OH’s exhibition is possibly going to be extended indefinitely which is also great.
Got a long weekend before my next dose to way happy. Isn’t your next one today Nicki? Getting very lost with all your dates now.
so those of you who have switched to cmf are having the CM 1 week and the F the next eh. In that case I do have some advice.
The C is known to give weird sensations in nose and mouth and apparently the whole sucking ice cubes or even boiled sweets can work wonders there. I would do the same with the F next week if I were you as I’ve just read that people on Flouraracil (sp) have a 40% likelyhood of getting mucositis, ie sore mouth etc. I took ice pops last time and I think they may actually have worked woohoo, just all my skin is dry now and I swear my nails aren’t growing at all now, they do seem to have a couple of slight stripes on them too. 3 weeks apart I wonder?
lovely and sunny here too Lisa woo hoo. so we’ll do coffee or something once we’re both through the worst of it. Have you been to the wedding yet? If so hope it wasn’t as painful as you feared it would be. I’d be lost without Tommy through this (despite me trying to get him to leave me for the first 4 months of the year because I felt so worthless) so I can just about imagine how hard it is without hubby around. Hope he’s with you in spirit though. I know that we are all made from startdust and the laws of physics say energy never dissipates which to me means that our essences stick around. I like the idea anyway.
Do any of you get the prickly bum sensation, I think it’s the steroids or the ondanestron that does that one, I nearly jump out of the seat every time. There was an older guy at chemo last time and he looked like a startled rabbit and his wife kept suggesting he *relax* so I asked him if he was maybe having the prickly sensation that makes you jump. He was so relieved that it was just him and his wife stopped thinking he was imagining things.
I have to try and hide some of it now or OH really won’t take me next week, he hates seeing this more than I hate feeling it I think. It’s just so unlike me to wallow etc that it’s hard when I get angry and I do get soooo angry.
So happy me is going to enjoy this bank holiday before monster angie returns on Tuesday 
Hi everyone
Angie- I get the pin pricks down below quite bad nure had on put in 1ml of steriods when it stared which surprised her she said noemally most people only feel it last few mls guess iam a bit more sensitive.
Lily- How you bearing up thinking alot about you and your family. I feel like sh-t just now but I think its the steriod injection that causes it with me so hopefully should start picking up soon.
Joanne
Hi everyone,
Thank you so much for all your lovely kind messages, we have eventually booked the funeral for Mon 1st Sept at 2 pm. It is my son’s first day back at school so not ideal but we were struggling to follow her wishes unless we went with that day, so that was decided.I think we are all coping well because she wanted this and I think it is actually amazing that she passed at home, in her sleep with no pain, sedated through the last few days. The best we could have hoped for. So until the funeral I think I will be ok and I will be no use to anyone that day at all, yes Lisa I am a walikng drip from start to finish.
Changing the subject, my son got 10 higher level GCSEs and can go into the 6th form with no resits needed, hooray. He was a bit disappointed with a couple of individual marks but hey I had an operation, my first chemo and had to leave him at home wondering how I was in his main weeks of exams, so I think he was amazing really. He is out celebrating for the next 4 days!! Nicky good luck with festival, hope you don’t get called out as many times as me. It is a nightmare at V because they block all the mobiles except virgin, so they have to walk well away from the site before they can call you or each other. Really want to watch the show, you must remind me, I have no brain or memory to speak of! Lorraine well done for the end of this part and hope your next one is not too bad. Take care.
Julia I must remember to check the legs as I have fluffy baby hair growing on my head now. I have not been talked to about hormones yet, seems so far off as rads next due to having a lumpectomy, not mastectomy. I read that you can have CMF in 4 different ways. I get all 3 by iv on both Tuesdays.Do you know what dose you get? On Tuesday I got 70mg of Methotrexate, 1000mg of Cyclophosphamide and 1000 mg of Fluorouracile. I assume I will get the same next week.Is this the same as yours Joanne? Jo sorry you feel so bad, what are the symptoms. I just have a dry mouth but will see what happens now the tablets have finished, may sink later this week! Take care. Thanks kirsty, hope you are ok too.
Angie, love the idea of recycling the cancer baggage, what colour bag or bin? It is a good thing to throw yourself into work but do a bit of nurturing too as the body is taking a bigger hit on these later doses. Hope the veins improve, not long to go if you can stick it out, have you used both arms? I got prickly bum once with epi but no other nurses gave me that so maybe it is the speed of injection or somthing? I took lovely solero lollies with me to stop the mouth. Can you believe the fridge in the unit is positioned so that the door does not open fully so you cannot lower the freezer part!! Took them home melted as forgot when felt ill. I was sucking crumbly mints though, after the methotrexate gave me the sensation of smelling and tasting vinyl/plastic. The C and F did nothing to my tastes, guess we are all different.
Well I have to say that i am finding this regime better in the first 2 days (sorry joanne) and have not got the bubble that i used to go in, I hope this lasts, then I will feel better about going back on Tuesday. Can you believe the stupid relay teams in the Olympics, unbelievable. Will miss them when they finish.
I can’t remember who is in next for chemo? Bevy are you ok, have not heard from you recently?
love to everyone and thank you for being so kind.
Lily x x
Good morning all: Hope you are all feeling OK - we actually have sunshine here in Leamington Spa - makes a change!
Lily: glad you have got the funeral sorted - it is sometimes easier when you have that done as you know where you are going. We had a Humanist ceremony for my Mum as religion wasn’t her thing and it was really great. The guy who ran her nursing home said it was one of the best (can you have a best???) funerals he had been to. Whatever has been organised for your MiL, I am sure will be exactly right for her and for all of you. Large note in diary for 1 Sept to send cyber hugs to you on that day.
I also have to had rads before the chemo, but I keep badgering them for ALL the info. Only probs with rads is that it will run over the dreaded Christmas and New Year but I think I will negotiate some days off. We will see. WIll yours runs from directly after the CMF - like number 9 - or will they give you a rest??
SO far as the drugs go, I am having 42 x 50mg over 14 days which by my sums is 2100mg. I guess the Mex thingy was 70mg as it was a v. small tube. Will check the Brain Dead F next week.
Really good news about your son - he must be partying like mad!!
Angie: Love the recylcing - the bags should definitely be bright pink - that would confuse the bin men!!!
I am still doing my two days a week at work (Thurs and Fri) hence catching up with you all on Thursdays. I really need the discipline to make me forget about the other stuff. Am trying to find ‘fitness’ class for my days off - have found one on Wednesdays which combines yoga, Tai Chi and Pilates. Just have to get my lazy butt into gear to get down there.
Well, Bank Holiday weekend - Sat is supposed to be nice - depending where you are in the country - but rest is not so good.
Keep well, enjoy the sun if we get it. Will catch up with you all next week.
LOL
J
XXX