wendy 56 - thinking of you, Its scary when you have daughters. I look at mine and think - this is something I cannot protect you from - and I feel like ive failed as a mother.
Mandy p - i wear a premade heradscarf in bed cos my head was cold too. (make one up and sew into position). Couldnt wear a hat - FAR too itchy!
Cress - Chocolate martini sounds fab! hows the lactulose doing? havent had that since my kids were born!!!
Well the anti hists are working. My face is now no longer very angry - just a littlle annoyed!!! its my skin thats hurting now - so swollen and sore aaaarghh xxxx
My white cell count was so high there was no space for red cells so the filgrastim has been stopped. I did get the chemo tho. Woohoo. Then, inspired by Cybele's tales of Yorkshire culinary glamour, we went for a drive through the snowy Woburn deer park and finished up in a very posh pub where I had a chocolate martini by the fire. Almost worth the chemo. Almost. I am a great believer in having a treat to accompany anything unpleasant.
The whole thing made me so exhausted that I have slept all night without chemical assistance. It might just be that I have no red cells, and I think they carry oxygen, so without them sleeping is common. Lets hope I don't need the threatened blood transfusion cos I am already running out of viens. Efficient, but not very personable, chemo nurse managed to get cannula pretty much in my wrist. Ouch. (Still too stubborn for another line Cybele).
For those of us interested in our bowels (and who isn't these days?) I have been promoted to Movicol and Lactulose. Will let you know.....
Hope everyone doing not too bad.....
I'm a week since FEC 3 and am feeling OK. Wasnt as bad a 2......how wierd is that......it's been different every time......
I had reflexology on monday ..... and it was lovely.... the lady was so kind and told me about her own mother's fight with the beast 16 years ago and that her and her 4 sisters were all arranging a 70th birthday party for her... stories like that are good for us. I dont know about you but I find it hard not to think aboout the negative,......
I'm sleeping really bad, not sure if it is because i now have no hair and my head is cold...... tried to wear a hat last night, but it wasnt comfortable.....
lots of love to everyone.....xxxx
It must be very hard for you to cope with this, I'm so sorry and I hope your results are negetive. I wish you and your daughters all the best. I suppose this would be the time when prevention is better the the cure, but I'm sure that's no consulation.
If my results are positive for BRCA 1 and 2 my daughters then have the choice of also being tested. They would have a 50% chance of also carrying this gene. If they are not positive they can get screening from 40. If they are positive they have a 4 in 5 chance of getting BC in there lifetime. Their choice then would be double MX or MRI from 30 yearly and then mamo at 40 yearly and tamoxifen for life. Also would need to have ovaries removed. It's going to be a scarey time for us worst than me having this bloody disease again.
Best to know what they are dealing with and my eldest can't wait to get new boobs ! All the same scarey !
Hi All. I'm fed up and needed to tell someone. My OH has got a stinky cold and has had an allergic reaction to something (don't know what). He's been to the GP and has tablets and cream. There's no way I'm sharing a bed with his germs and lord knows what tonight.
Lisa Lou, I was so sorry to read about your hair, I do admire those of you who are coping with keeping the family life 'normal'. I'm free to indulge myself in deep self pity and can't imagine the pressure you're under.
Maire, it's good to hear your 2nd tax has been a bit better, hopefully your treatments will all go in that direction.
Cybele, I hope your treatment goes as well as can be expected, perhaps the meds will make the difference this time. Well done for holding out for what you wanted, it's easy to be swept under the carpet if you feel they think you're being 'difficult', I'm glad you didn't let her.
Wendy, will your daughters be able to be tested too?
Good luck to all having treatment.
And cheering news about no3 not necessarily being the worst. Stan told me this, but then he hasn't had chemo himself, come to think of it...
I've got enough Lorazepam to see me through the bad days, should it become necessary. And there's also sloe gin if I get really desperate. Hoping that FEC3 will not be an anti-alcohol cycle, like Fec1. I didn't - couldn't - drink a single glass of wine during FEC1
Wendy - am having FEC x 6, but really it's only one week that's really bad - so far. I have the nausea for most of the time, but as long as I have the entire range of anti-emetics, it's manageable.
And hey, I still have my hair. Until tomorrow, anyway.
Cybele - sending hugs for tomorrow. I have considered the idea of checking into benzo land for the duration but the b*stards won't give me enough drugs. If it helps at all, I don't think it is true that any particular cycle is doomed to be the worst. I never found any pattern. The only thing I do know is that no 3 is half way through. All you can do is keep on putting one foot in front of the other. You are getting there. I'll do mine tomorrow if you do yours, xxx
Cybele how many have you go to have ? Seems absolutely potty that they can't help you it's just not on nobody should have to go through nearly 3 weeks of hell.
But fingers crossed the next one is different perhaps your body will start to accept the poison they are pumping in and not treat it as an alien because it is being given to you to make sure this bloody disease does not return.
Am so scared of FEC 3 tomorrow.
Areyou serious about the sedating thing, Cress, because I have been wondering about the same thing? The week after the steroids wore off was so awful on FEC2, and everyone says FEC 3 is the worst.
i was thinking maybe start taking the Lorazepam, when it starts getting bad, and then continue for the next 5 days..
Even once the nausea was controlled last time, I felt so toxic inside. I was really losing it at one point.
The thought of going through it all yet again, only worse, is just DOING MY HEAD IN.
Good luck to all having poison this week xx
Maire - I had a similar problem with scan scheduling. Total inflexibility.
Cress - still going to have blood test anyway but they can't do it until just before next chemo as only had chemo yesterday so will take extra blood with chemo blood then takes 8 weeks after Addenbrokes receive it To get results . That means results wll not be back in time for surgery at end of March when I need to make decision about double MX but thinking I will go for it anyway as he said there are genes out there that they don't know about yet. Feel for my daughters as if I have faulty gene they have a 50% chance of having it as well .
Hi Girls, needed a bit of a diazepam holiday. Really felt sh*t for days 6 & 7. Need to be sedated next time before it starts. I keep learning, just slowly.
QueenD - I hesitate to tell you this, but I ended up with actual nappy rash on Taxotere. Let me know if you need the names of more creams and I will fish about in my giant plastic box of drugs and dressings and see what I used.
Maire - it's very inconvenient of you to be having piosonous cancer treatment that clashes with radioactive cancer treatment. Perhaps you could try to be more considerate next time.
Lolly - hope chemo day has gone OK with no snow problems.
Hamley - hurty hair is normal I fear. Wedge glamorous wooly hat on top.
LisaLou - Pickled Onion Monster Munch? I am impressed. I have eaten 2 packs of hula hoops and some quavers today. Think I am just celebrating lack of moth mouth since I decided to just wallow in Corsydyl and let all my teeth go brown. Sod healthy food - eat whatever you can get down and taste.
Wendy - is there a shortage of needles? Can't they just take a bit more blood and get on with it? Or have I missed something? Not had my genetics appiontment yet - what do they do?
Mandy - really hope you feeling better - scared just comes and goes - hang in there, x
I can now confirm that Filgrastim does work. They said my white blood count was very high. Just off to find someone with plague and snog them. If I survive that, I will be getting number 2(b) (or no 4) tomorrow and finally making it 1/3 of way through.
Hello fellow crackers had second TC yesterday so half way there. Feelinga bit yucky today but ok ish.
been to genetics as I am TN and also had BC twice I more than likely carry the BRCA 1 or 2 gene so they are going to try and find some blood I donated 14 years ago when doing trials for this mutation and if blood ok I should have an answer in 4 weeks if not have got to get sample of blood before next chemo and will be another 8 weeks.
Fed up with this snow now causing chaos with driving to all these bloody hospital appointments .
2nd tax seems to be much better than the first. Tongue is ok....so far.. and I seem to be rallying a bit on day 6. I wonder if it's because they slowed my treatment down when i had a reaction.
Having just read Cybele's blog I really sympathise re. doctor's lack of understanding. It really knocks you sideways when you come across a stumbling block of a person. I think we all try so hard to be good little girls. Not complaining too much, putting on brave faces etc. Well-we're all paying for the NHS. It's there to help sick people and if some of the folk that work there can't put up with folk that are ill and struggling-too bad. I wish I'd been less humble on the phone the other day and said-sorry, can't make the appointment and left it at that. Rant rant!
Hamley-When my hair came out my scalp was sore. Very odd sensation. Must be the follicles being irritated or something. It passes once the hair has gone. It's not nice being baldy but you do get used to it.
Lisalou-I got massive fluid retention from Tc. I put on 4 lbs overnight, but it does eventually calm down. Good luck with your next tc. Hope it goes ok (and enjoy the bacon rolls).
Lolly-Hope chemo goes ok today and Cressida hope you're having a lovely snooze.
...and I do appreciate the NHS really and applaud the fantastic staff who far outweigh the old miseries.
Good luck lolly! movicol corsodyl and lots of fluids!
Hamley - hurty head? yes! ask your gp for Aveeno cream
Maire - big boo to the the horrid appointment booker!
lisalouw - keep going. Ive just had my 2nd as well but by next time itll be the half way stage
Mandy p - im not sure if you ever stop being scared so make the most of EVERY day!
Cress? - u ok?
its still snowy in Brum and my daughter is enjoying a THIRD snow day! hope her school is open tomorrow Shes doing GCSE's for heavens sake! She also has tonsillitis and is on antibiotics - and its my danger week! eek!!!!
Hello everyone , TC looms again, just as I was starting to feel a little normal again, boo! So dreading feeling ill again , had a shock today in the shower with my hair , clumps seem to come out , I did have the cold cap but looks like it's not worked , I'm trying to keep it together for my 3yr old boy , but keep feeling the tears well up , I've also seemed to have put on weight from no where , or maybe it's being back at my mums and her lovely bacon sandwiches , also I try to eat healthy but my taste buds have gone , I can still taste chocolate and pickled onion monster munch though, not very good for me but so nice , welcome hamley , good luck to everyone having chemo this wk , I'm only on my 2nd and it's dragging , I swear by sudocrem ! Having developed spots since chemo , never had spots before , I've been putting it on them and anywhere else that's sore xxxxx oh and wish the snow would do one ! I'm going to have to get a taxi to hospital for bloods tom as my dad can't get the car out ! Xxx
Hi All, thanks for the welcomes.
Maire, I'm sorry to read about the unaccomodating woman for whom changing an appointment date was so much trouble; it doesn't take much to be pleasant and I'll bet the rest of the team she works with would be horrified to know how she came across.
Lolly, good luck with FEC 2 tomorrow, you'll be in my thoughts.
QueenDrama, I've had 'hurty hair'; from about day 10 after FEC 1 even if the wind below my hair out of the direction it grows in it hurt. I had it shaved off thinking that it would help but even the short bit of regrowth I've had still hurts. Does that sould anything like you experienced?
just had bloods done result are perfect, so all good for my 2nd FEC tomorrow, good luck to all who is also haveing theirs this week.
wish my wig would turn up as dont think my hair will hold out much longer.
i'll second big sis fo for the party! and oh yes I remember now , my 2nd posting was to Lolly to tell her that I had had my head shaved when my hair started coming out. i think it helped. no idea where my previous postings got to!!!! Actually now I think about it - 3 are missing!! Is it a conspiracy? or am i just not pressing the right buttons!!! (probably the latter!) x
Hi ladies my last two posts havent posted for some reason. I welcomed Hamley and explained my sudacrem. basically i have folliuculitis- v sore and itchy head. the only thing that relieved it was sudacrem - which is nappy rash cream!!! anyway i ended up at hospital today because my picc line was really hurting. it appears that the district nurse deemed it ok to leave the sharp bit sticking into my arm! the hospital have sorted it and i mentioned my head and the fact that i have a butterfly rash on my face - all very common on tax apparently so have some Aveeno cream. will it be better than sudacrem? ill let you know! x
Day 5 post tax 2 for me. This time around has been a bit better. Slept off the last of the steroids and didn't get up till 10.30 this morning. Heartburn hasn't been as bad but feel a bit more nausea-maybe that's the herceptin. Just counting down the days till i feel better and praying moth mouth doesn't strike.
Got my dates in for radiotherapy and discovered planning scan is day after next chemo. Thought that might be a bit of a struggtle so phoned to rearrange. Woman who answered could not have been less pleasant. Felt I might have a wobbly lip moment. She was just really unaccomodating and seemed to lack any understanding. I realise everyone is going throught the same thing but so far have been met with care and support all the way through. So it was a bit of a shock to speak to someone for whom my request for daye change was a major annoyance!
Hope everyone is coping with all that the lovely chemo is throwing at them.Central Scotland seems to have missed the worst of the snow. Very cold though.
Cressida, Hope you're catching up with some nap time today and you get a better night's sleep tonight.
Cybele-That meal, sounds amazing....and the cocktails. Wow!
Welcome Hamley-hope you can make it to our Summer Christmas Party! Maybe we could get some of Cybele's cocktails to help the celebration go with a bang.
Flakes of snow falling now.
Pretty snowy in East Yorkshire......and very very cold. Finally got my head shaved yesterday - my friend who is a hairdresser came round with his clippers and a couple of horrendous wigs!
Didnt feel too bad on FEC 2. Took tablets to sleep, tablets to go to the loo, tablets to ease the pain, tablets to stop feeling sick and cant remember what else needless to say i have had plenty of tablets.....
....just feel a bit sorry for myself today......how do you stop being scared is what i want to know?
my kids are so young still and it's breaking my heart
Need to get a happy head on.......!!!!!!!!!
Cybele - thanks for culinary tales from Yorkshire - I am wide awake at 2.15am and that tale was just what I needed. I have decided to nominate BigSisFo to organise the Crackers' Christmas party. Anyone want to second?
Hi, thanks for the warm welcome.
A delayed Christmas party sounds like a great idea to me, something to look forward to after the one we've just had. I still had my hair at Christmas which meant that people forgot I might be tired and, yes, somewhat iritable. Now I have no hair (I had it shaved off on 3rd Jan) and I don't like the fact that people do remember and over compensate! There's no pleasing me. Hats and a wig called the 'Carol' (my sister, Carol, was not much amused) are the order of most days, but I don't mind the baldylocks look too much, it just makes my nose look even bigger!
I'm in Oswestry, North Shropshire on the Welsh border, is anyone near to me?
For anyone who's already had surgery, how are you getting on with the exercises? I find it difficult to get motivated sometimes and have to really force myself to do them. I don't want to be any more incapacitated in the future than I have to be.
Hi Hamley, welcome to the christmas crackers, sorry you have to be here like the rest of us but we will all become very good friends by the end of our journey i am sure.
Hi to everyone else hope you are have a fairly good weekend, I am due my 2nd FEC on Tuesday, but I am now starting to loose my hair, I have only half a fringe left now so looking quite lop sided, feel like pulling it out .
It still snowing in Bedford, hope it stop soon or I might have to walk to the hospital for my Chemo.
Take care everyone, and good luck to those who are having treatment this week & big hugs
Welcome Hamley. You will be glad you found this site it really is great for support and info . Any questions or concerns just post and somebody will help you as we are all on this roller coaster together whether we like it or not.
Just chilling watching the lovely snow out of the window and just hoping we will make it for Tax 2 tomorrow. Strange how I can't wait for chemo - think I have lost my marbles . Anyway will be half way there and just the lovely surgery to come.
Maire - clearing leaves? Hope they are under snow now.
Mandy - my nodes were clear in feb 2012 but have not been looked at since. Offically burying my head in sand. The other lady I met whose TN grew on chemo also spread to her nodes whilst on chemo. I know we are all different (I may have to ban that phrase) but that is scary. The reason my Onc is treating me so aggressively is the size and the growing on chemo. Oh well.
Hope everyone is moth mouth free and can get to all their piosonings, xxxx
Hi Hamley. Welcome - rubbish that you are eligible to be here - but you are very welcome to join us. Sorry your feccing chemo makes you feel so awful. Good that you are amost halfway through tho. Roughly what area do you live in? We seem to have most of the country covered between us so you might be near someone else. In any case we are planning to have a delayed christmas party when all this chemo sh*t is done. So it may be worth hanging about for that. Keep on keeping on, xxxx
Hi Ladies, my I join you (belatedly) on this thread? I've only just found this forum (I've never used one before) and would like to be part of it having seen the tremendous support from other people in similar situations.
I was dx in Sept 12 with BC and have had 2 WLE neither of which had a clear margin. My treatment is now chemo (6 x FEC), mx, rads, Tamoxifen and hopefully recon at some stage. I'll be having FEC 3 on 28th Jan and am dreading it because I felt so awful after 1 & 2.
Thanks Cressida - yes mine was smaller......26mm, although it had measured 5cm on the original scan......
When i mentioned that gene thing, my onc didnt think it was worth it given i have no family history BC or indeed cancer (although i have a very small gene pool; my sister died at 24, my mother is an only child as is my father and both his parents......) I think i owe it to my daughters to get tested, so will demand and then for me as I dont want this to come back if i can avoid it!!!!!
Were your lymph nodes clear Cress? again I might push for Rads as well - anything really.
Lots of love all.
I'm feeling pretty yucky but not too bad. managed a trip to M & S for some food and am going out on dog walk in a mo.... no where near as bad as FEC2!!!! ......yet!!!!
Hi Crackers. had my Tc on Thurs and 1st Herceptin. I had a reaction to the taxotere this time. Just mild lower back pains and throbbing. The nurse stopped the infusion and gave me more hydrocortisone, then started me up again 30 mins later. i felt a bit silly but nurse said I'd done the right thing as woman in next ward had full blown reaction and ended up with major emergency situation.
So far feeling fine. Have spent last 2 days clearing leaves in the garden. Expect side effects to kick in tomorrow. Moth mouth may be about to begin and that's without Lolly's special medicine.
Managed to put on 4 lbs overnight after last round of drugs. Just hoping it's fluid retention as I cannot cope with being fat and bald.
Mandy - I am TN and it laughed in the face of FEC-T. This is not common. I have only met one other lady whose TN got worse on FEC-T. I had mx. no recon, and super rads. Now I am having more chemo. I am waiting for gene test - TN under 50's should get it on NHS regardless of family history. Then I will decide whether to have other breast removed and ovaries and any other bits that might be trying to kill me. No-one will be able to say I shirked any horrible treatments. I had to be persuarded by Onc to have extra chemo and super rads were also her idea. I did not insist on them. I do trust her, but she can't see into the future and neither can I. My tumour was massive (10cm) so, if yours is smaller it might not be so necessary to be so aggressive with it. I contacted the BCC ask the nurse and talked it through before I signed up for the extra stuff. They were very good - maybe you should try - email them first as then they phone you (with your permission) a few days later and are well informed on the topic and you don't have to battle with the engaged lines. Good luck! xxx
Had FEC 3 yesterday in mx arm!!!
I spoke to lymphodema nurse who said it wasnt advisable but to speak to surgeon who said that id only had sentinol node removed that it shouldnt be a problem - i then spoke to a friend who is an oncologist and said that that was right and that using the bad arm is a historical thing..... the more i learn the less i know! is how im feeling right now!!!!
felt shocking last night but managed to get a decent night's sleep.....my friend treated me to a lovely massage on Wednesday and it has improved my back pain so that combined with my friend zopiclone actually made me sleep.....
very cold here in East Yorkshire.....Cybele are you still venturing up north this weekend?
Marie - how did you get on yesterday?
Cressida - i cant remember, but are you TN? think i may have responded on another thread to you.....what's the plan? I'm thinking of insisting on the gene test and then also asking for RADS even though not on my plan?????
love to all and thank you for your massive support...
Hello everyone , the snow is here in South Yorkshire , which sort of make me more paranoid with the what ifs !!! re getting out for emergencies , I'm not keen on this person I've become , went to docs today who gave me more antibiotics for sinuses and vit b for my smooth tongue , very strange
cybelle , hope you feeling better , the tiredness is so consuming , and glad I made you laugh re ferret ha ha
mandy , hope you ok , just been reading back about wanting to use your bad arm , terrible , hope it's all sorted now xxx
queendrama , I have TC so not the same but my left eye has flickered ever since and my eyes sting , very frustrating
jayne and alpal , love the nails and I so love the saying cancer fun sponge , that's so true
wendy , do you have the immune booster injection ? Did you have to he same as me where they plummeted to nearly zero , I'm going to ask for them when I go next weds for my bloods
love and thoughts to everyone on this snowy evening xxxx