Hi Lisa,
just saw your post as I was about to go. If your back is worse at work tell them to get you a more supportive chair, perhaps that is the problem or just making it worse. You are covered by the Disability act now so they have to do it. The scan would show any problem, just ring to make sure you get the results from it. I think you will probably see the onc after rads to ask, how many are you having? My friend felt a wobble as it hit her chest and it scared her, can you feel it? Rads sounds fab to me still on chemo. remind me of that when I am moaning about them! Still got 4 more lots of poisoning, going on forever and ever. The close up photo sounds horrible, hope ratty smiled! Glad to hear wedding was ok after all but I’m sure it gave you more stress thinking about it. How much money did the guys raise from the waxing in the end? I am absolutely fine, no Se so far and all are really mild on this, no nausea, constipation at all. Decorating all done with the carpet due on Monday just wish the stink of paint would go. Wish I was still your twin!
Lily x
Hey Lil.
Hows the eyesight now? Sounds like you have an awful lot of steroids over 2 weeks, does this cmf thing still have 3 days of steroids with each dose? Anyway really glad to hear the side effects aren’t so bad.
Lisa: Dr O (polish guy) explained why they don’t do scans as standard and it’s basically because they’re not really very conclusive and that you’ll be symptomatic before you can be sure anything would show up. But he did also say that any concerns and I could see him at any time it’s just not worth it as a precaution as I could have a scan, be all clear, and then something could start up. Things have to be more than the size of your little finger nail before they’ll show so a clear scan isn’t proof that nothings going on and can actually give false hope. He also said that if the pain moves then it’s likely to be muscular and having just finished chemo you’ve been battered on a level that’s really not funny. But he did say if we want we can have, even if it’s just for peace of mind so I’d call your BCN and arrange a scan if it puts your mind at rest but try and not get wrapped up in worrying about the results.
Got OH’s sister and hubby coming up tomorrow, haven’t seen them in 5 years so hoping I don’t shock them too much, best not grin too much as it makes my lips bleed and that’s not pretty 
everyday… so glad you’re getting a break from treatment for a while.
right back to entertainment to try and raise these neuts for the final bloods tomorrow…
sleep well and sweet dreams all.
Angie
Lily, just thought I’d mention that my brows are growing back, so’s the noggin hair. It’s 1mm at the moment but it’s an even covering. Just as well as my buffs are all stretched now
Hi all
Just a quick catch up.
Lorraine - I’m so pleased for you, sounds like we will be twinning this thing! I’m aware that chemo will be used again for me but I’m hoping it’s a long way off, so we’re both on hormone therapy and bisphosphonates for now - hopefully a lot more do-able than chemo! When I went to the Secondaries day this week a lot of other ladies had had many different chemos and a lot are nothing like as bad as the side effects FEC gives you - thank goodness. Enjoy yourself (as you always manage to do) but please keep posting it’s good to talk!
Lisa - I’m sure your pain is a positioning one, as in sitting badly, but once rads are out of the way insist on a scan of some sort if it does put your mind at rest. I agree with what Angie has said, and her onc, but do what you need to do. Hope rads are OK, just watch out for some tiredness as they build up. And use any cream you’re given to keep the area hydrated - counting down now! Glad ratty almost had his/her moment with the photo - a lasting momento
Joanne - take care with yourself and it’s been very distressing for us all on the whole forum to read about Paula hasn’t it? So sad but unfortunately nothing we could have physically done would have helped, just hope all of our support meant something and helped.
Well - back for bloods today - to check my menopausal status before next weeks oncs appt. The CT scan tomorrow - will remember to drink the water, Lily! My hand is still puffy so will see about that next week as well but getting bloods today will not be much ‘fun’, neither will getting a cannula in for the contrast dye tomorrow, portacath here I come I think! However I will celebrate today by not having to drink cooled boiled water anymore - hooray - as I’m 3 weeks post chemo. How lovely to drink from the tap again and not boil my kettle so many extra times to make sure I have a supply of cold water in the fridge - the electricity bill should go down a bit as well! I’m also watching the H but it’s very difficult to see if there’s any progress as I didn’t lose it all to begin with. At least whatever does grow shouldn’t fall out now as I’ve gone past the ‘drop’ phase. As Angie says - the old headgear’s getting a bit knackered by now, so is wiggy but I’ll keep wearing it until I feel comfortable baring my head to the outside world!
Take care to all I’ve mentioned and all ladies I haven’t.
Nicky xx
Hi,
Lorraine so sorry we must have posted at the same time and I did not look backwards and see your brilliant news and missed to give you a roaring hoooooooooooooooooooooooooooray.So pleased for you. will post later, friend arrived
Lily x
Hey Nicky: Hope the scan goes well and the little b***ers have shrunk more than expected (I dare to dream), how long do you have to wait until results?
Off for bloods in an hour and Aldi to buy silicon bakewear, being neuts point I will of course be covered in antibac and have it up my nose (vicks do a first defence nasal spray too 
So Lily are you still bouncy?
hope everyone else has a happy sunny day regardless of where you’re at in your chemo cycles. I’m at nadir point and still smiling so there’s hope for a happy day.
Angie
Lily just read on another thread that you’ve been up from early hours and that was before the steroids… I think you may need to develop a healthy computer game addiction. Starcraft is the one for me (strategy game) used to play that with mates until the not so we hours of the morning (not unusual to see dawn while trying to wipe out the enemy camp LOL). I think you may like the sims actually, just a hunch, you can play god and smite the evil ones when the dex is really getting to you
hiya all
Lily, thanks for that - im starting to think its a positioning thing as not in a specific area. Leg waxing rasied just over £2,000 which Im chuffed with, havent handed it over yet! Glad you arent getting too many side effects! Least Im infront and can forwarn my twin!! Didnt feel anything with rads but been on loo for england this morning, but even managing work and wearing protehsis in pocket as said okay as long as doesnt chaff the skin - i was more upset about havint to wear softie again for three weeks as looks as though I was going to topple over so lopsided!!! Well off for another frazzle this afternoon - got the car to myself so gonna blast some music and enjoy the ride!
Nicky - thanks will push for a scan albeit scary. Hope your scan goes well and shrinking!! Have no photos of me with ratty as dont want to see how bad it looks and photos always manage to look bad!!
Vertangie - know what you mean about scans, just worrying as my aunt got some pains and when developed secondraised quite far advancaed and said probably there from the start so maybe if she had been scanned might have been found! Most other areas do seem to scan on diagnosis if lymph node involvement but well see. Hope you have fun entertaining!
x
Lisa… didn’t realise you had lymphs involved… I would have thought they should scan then… I’d certainly ask then just to be sure that it’s nothing serious and for the peace of mind.
hi everyone
my thoughts are with you all who are still battling through chemo. you dont realise how much you hate it, until they say you can have a break. all of you who are worried about secondaries request a scan, i know they may not be acurate but at least nothing significant would be missed.i too believe they should be given to everyone.
i have started on my tablets today, no side effects so far. i was hoping i would lose some of this fat,but oncologist said you could put some more on with tamoxifen, ahhhhhhhhhhhhhhhhhhhhhhh! i am not giving up my cake! he said you need to take it on an empty stomach (whens that going happen?) its never empty.
dont eat for at least four hours previous, and two hours after. sit up after youve taken them. so i got up to take one at 6 then went back to bed and had breakfast about 9. if i got up my usual time about 8.30 theres no way i would wait till 10.30 for my brekky., i am such a pig!
my hair is sprouting a little, but it seems to be growing through greyier than before, i knew this b.cancer would age me. but really i am so grateful for a break, hope some more of you have good news soon. i hate to think of you suffering.
Nicky 08
have you started your tamoxifen? how do you find it? we do seem to be on the same path,
Lily 2000
Hope you pick up soon. how many more have you got lined up? bet your hall looks lovely, you deserve a treat. Somebody said computer games would keep you occupied, i used to play letter rip, but now am knitting, reading, or just going out and about. i bet you find plenty to keep u occupied.
thanks to everyone who sent me good wishes on the end of chemo
take care everyone.
Hi everyone,
bing boing boing bonig boing boing - you get the picture. Don’t worry about me till I crash land to earth. feeling on top of the world, eating for England, full of energy, happy, thrown anti sick tablets in the sick bin and waiting to fall out of this mania!!! So while feeling so much brighter, albeit drug/dex induced I will say today I glimpsed the shiny end to this stuff of 2 doses in October, 2 in November and then I am done. I will now look back at this when the dark mood comes back!
Angie sorry to hear you are not twinning with me but prob meet you on my way back down. I didn’t realise you would still be having nadir blood tests. How did the visit go and glad the Dennis’ put in a show, they make such a difference? Noted your great ideas about how to fill the night hours, yes i do like sims but haven’t played for a while. I am a big fan of computerised mah jong, so might put that on later. I get steroids iv on the day and then 4 in one hit for the 2 days after, for each cycle. I take them first thing but they seem to hang around still. My face is definitely changing shape on this unfortunately. Also my temperature keeps going low, not sure if Julia and Joanne are feeling cold too? I was woken up by my own shivering this morning, all tucked up in winter PJs and winter duvet on up to my chin. I took my temp and it was 35.7, what is that about? My daytime temp is 36.4 and that is with layers on. Doc at the unit ignored my comments about my temp but will persist.
Nicky hope they found a vein reasonably easily today and thinking of you for the scan tomorrow, say you are very nauseous and need the palatible one. You mentioned the cannula but for my CT scan they put it in my inner elbow (and it was a tiny thing smaller than for chemo), which is a better spot for most people as I had to have my arm sticking out the back as it wizzed me through the arc. I might have got a good nurse but it was one of the better ones for me. Hope yours turns out the same. Someone said you need to drink a lot after to flush out the dye or it gets your bladder. good news that you don’t have to boil the water, i am assuming there is a problem in your area. What a pain. I can’;t really see my hair’s progress but have slight fall from the CMf, hope that doesn’t get worse as prob a month off a cery short pixie cut and going commando. Might look like you know what the kids would say! Lol I wouldn’t care.
Gosh Lisa do rads give people the trots! I had no idea. Glad it is going ok, do you move to surgery after the rads or is that later? £2000 is brilliant, where is it going to? I had not thought about the extra problems with a prothesis with the radiation burn. Do you get these booster rads? You sound much better, are you feeling on top of things a little more now?
Lorraine you may have just bounced me down, putting on weight and going hours without food!!! FOR 5 YEARS!!! Oh my I feel like fainting already, I will just have to be a fat girl and happy with myself, there is no alternative. That means no breakfast before work for 5 years, can’t do that when teaching full time, what a dilemma. Definitely took one bounce out of me. I feel like I am in Mary Poppins in the scene where they have to think sad things to float back down from the ceiling. Joanne how are you, talk to us, get thinking about how fresh the air will be up those mountains and your sons taking a picture of you from below. Bevy, Kirsty, whoever else I have forgotten take care.
I take everyone’s views about scans only showing things of 5 mm I believe it is, but can you say that a growth of 5 mm would definitely be felt as a side effect. I would say possibly not in internal organs until much larger. Would I know if my tummy was showing signs of anything else while on chemo, no way. Yes I would notice a cough but it must depend where the growth went to. I know scans have an element of risk, as does flying, but so does stress if you are worried. The full scans we all get in our unit have reassured me. It was good to see my oncologist looking through my body from top to bottom on the 3d image from the scan, to make sure the radiographer had not missed anything and that base record is now sitting on my file. I hope it never needs to be looked at again. That is just my peersonal view and I hope that we all get exactly what we want, whether it be lots of scans and reassurance, or feeling better not to have had more procedures that might not be necessary.
hugs to you all. Lost another bounce being serious there. 4 more boings to go
Lily x
Hi All
youve all been busy writing away.
Was in abit of shock yesterday as as much Im heart sorry for paula and her family It really hit home our mortallity and this was hard to bear as its been a big worry for me recently but trying to stay positive.
Anyway got my chemo yesterday and yet again they screwed up on my meds. First of all on tuesday I pointed out to my onc that i had slight infection at the entry site of my hickman line but i had it under control and that it was clearing up fine but he insited that the nusre clean and redress it and hey pesto wakend up on wed morn with whole area around it about 5 inches square looked as if i had been scaled and extremely painful so much for hands on nursing he wanted it cvleaned with iodine but i was told that this corrodes the line itself do these people know anything any way after treating it myself the inflamation has now subsided and going back to normal. Got my chemo as normal and havent felt too bad today was just like a bad hangover which iam now coming out the other side so I hope the rest are no worse than this and I will be able to finish my chemo which I was on the verge of stopping.
Hope everyone is well
XXX
Joanne
Hi Joanne,
know how you are feeling and hope the dex sends you a bit higher soon. What an idiot to make your arm even worse, you just expect and deserve better. Hope this one is not too bad for you.
So another one done and dusted and speaking of mortality that is exactly why we are doing this my friend. So lets walk on down this path a bit further together, there might be something really nice for us on the other side of that hill we are walking up.
Big hug and think of those mountains
Lily x
Hi Lily
Ben Nevis has nothing on this moutain lol
Joanne
Amen to that Joanne… it’s only 2 x 600 meters… that’s nothing on months of chemo.
Hi buddies
I’m up early today as sooooo excited about my CT scan! Actually I got up early to make sure I can have something to drink and eat 4 hours before the scan! Lily - I’ll see what veins they may find as the ones on my arm have hardened up so much with the Epi part of FEC. They had difficulty in the CT dept finding one in my elbow crease before I’d even started chemo so I’m not holding out too much hope! I was lucky that I got the head vampire yesterday so straight in to my one good vein in my hand, a bit slow filling up the testubes but of course it wouldn’t stop after!
Lorraine - I’m not on Tamoxifen this time round. I had it after 1st dx in 2003 but it had stopped working by the time this dx came about. I’m going onto another type of hormone tablet that works in a different way but still blocks the oestrogen, Letrozole. I hadn’t heard about taking Tam on an empty stomach and the notes on my last, unused, pack don’t indicate you need to. Are you talking about the bisphosphonates as I know the tablet form has to be on an empty stomach? I hope you are for Lily’s sake! Can just see her setting out her breakfast in the middle of a class and telling them to get on with it whilst she tucks in LOL
Joanne - hope you are feeling OK in yourself, obviously Paula’s untimely death has affected you a lot, as it has all of us suffering with BC. I don’t know what to say to help but I suppose the very nature of this site brings us in to closer contact than in our ‘normal’ lives with ladies who don’t survive this awful disease, just as it brings us into contact with many that do survive. Where would be all have been if we hadn’t been able to moan, grieve, ask and laugh on here? I think I would have felt so sorry for myself for the last 4 months going through chemo let alone getting my 2ndary dx, this site has helped so much, in particular all you lovely ladies. On another note I hope you don’t suffer too much after your chemo - sounds like they tried to make you suffer before instead! As Lily has been counting her doses-to-go I hope you also can see the light at the end of the (very long) tunnel.
Lisa - well done with the amount raised from the waxing. At least the men know it was worth the agony. Have any of them got hooked on smooth legs as a result? Hope the stubble growing back didn’t cause too many problems - at least it will give them an insight to what we have to go through to look as lovely as we do
Angie, Kirsty, Julia, Bev and anyone else I’ve not caught up with, I hope you’re all doing well and can look forward to some good weather this weekend and enjoy yourselves.
Take care
Nicky xx
Hi Nicky
good luck with your scan today hope it goes the way you want it. I feel almost human toady and thaked god the minute I wakened up. Made a cuppa took the dogs out opened my laptop to see who had posted and discovered Ive cracked the bloo8y screan luckie its just in the corner but just another thing to deal with its like you cant be happy for too long somethings always got to give should be used to it by now on the morning i went for bloods some idiot had broke my wing mirror off and it wasnt an accident swings and roundabouts.
Joanne
Hi Everyone
Just had my second session of Tax yesterday and feeling a bit nervous. I will be more observant and hopefully will catch the signs before ending up in hospital again. Was also told yesterday, that instead of one single injection in the stomach, i will be having them over 7 days. I have a nurse coming out on Monday to teach me how to do the injection, so that will be fun…not!!! If it is going to keep mt white cells up i don’t mind. Still on antibiotics to fight an infection i had picked up, so with them, steroids, anti-sickness and pain killers, will be rattling for a while. That is my update on my news for now.
Hope everyone is okay and lots of ((((((((BIG HUGS)))))))) to all.
Have a good weekend
Kirsty xxxxxx
Hi Kirsty,
can I ask what happened with your 1st tax as I had my 1st one today after having 3 tac which had not shrunk the tumour. probably having 4 tax. Dont like the sound of stomache injections… but have to keep the whities up. My sister is a diabetic, she must have had thousands of self injections over the years, I remember her first practice age 13 injecting into an orange!!! and nearly 40 years on and still doing it!!! I will be rattling with you, more steroids tonite, anti sick then painkillers at the ready, which ones do you recommend? Any advice for tax???
take care
Chris x
I shall keep this short as I don’t want to distract but am excited for you now Nicky too, when do you know the results… on tenderhooks now
Joanne, hoping tomorrow is a less break things day for you… I have bouts like that too although not with people targetting my wing mirrors!
Kirsty. I think the daily stabs are supposed to be much better and should keep you out of the white place but those on top of the tax I would be expecting a to be achy judging by what I’ve read but there are pain killers you can take if that’s the case, I don’t know which ones but your chemo nurses will tell you.
Joanne: glad your managing to trundle on despite the inflammation, this chemo has been hard on you hasn’t it.
I am as usual not suffering too badly at all. I just have sore mouth and ulcers and one which is on the very tip of my tongue which makes me go ouch every 45 secs, nothing major but damned annoying, still it will pass and the propolis mouth wash does numb the whole mouth beautifully for about 45 mins. I put a post in complementary remedies for that one as it’s so good, more effective than cocainne as an anaesthetic but not likely to kill you LOL.
Anyway hope you all have a great weekend.
Angie