Hello ladies, hope you don't mind me gatecrashing your thread, but I've just read through it all and it's made me feel so much better, your all so nice and posative

I was diagnosed with triple negative BC in June, I am on my 5 of 8 cycles of chemo, these last four being Carpoplatin and paxataxil, there breaking down the paxataxil to every week, i have my last chemo on 6th January and although we shouldn't wish our lives away, I can't wait, after that it will be surgery and radiotherapy, I have three lymph nodes under my arm and two lymphs under breast, but on last scan the two under breast have cleared, I'd like to ask if any of you on paxataxil oy carboplatin have had fuzzy head, I can't explain it but fuzzy slight dizzy head, I'm at day 10, my other cycle I felt so much better by day 10, it's not really bad but just annoying as I can't drive while feeling like this. Again lovely to read all your posts and really hoping your all feeling well, xxx

Hey Davia

Of course not, welcome to our group that no ones want to join haha!  I was diagnosed in August so just had my 3rd course on Tuesday.  Not feeling too bad at the moment, fingers crossed it stays that way.  I have 1 more of EC then i go onto the carbo / paxo and paxo weekly.  Hope there are no major side affects of these.  How you doing on these drugs, just the dizzyness.  

I have in my lymph nodes too so will have to have all of them out, little worried about the opp but one day at a time eh.  I'm also waiting on my brca test, guess they will send a letter confirming yay or nay.

Yeah i could drive for a few days after my second one, felt like i was on drugs all week!

I managed the cold cap on Tuesday, but hair is thinning quite a bit so not sure if I'll carry on .

Hugs

xx

Hi Mich

Sorry to hear your hair has started to fall out, what a rotter, mine fell out loads on EC but on paxol combo it seems to be growing back very slowly, but it's nice and easy to manage, that's the posative lol I tend to wear scarf and crochet hats more than wig, there more comfy, but wig is nice for special occasions. 

I have a few eyebrow hairs left and like you my eyelashes are very sparse, I use eyeliner more than mascara, I haven't booked to go on a look good feel good course, I must do it soon. 

I get spots on my face, but no rash on hands, the spots are always red and blotchy, very attractive lol

As for the picc line, I can't wait to have mine out, its been great in that bloods and chemo are administered in it, and no needles but its restricting my hobby, I have had to give it up since having it inserted, but like you say it's upto the patient what they have, I was never really given any info on what was best, I was in picc lined up on Friday, chemo on Monday, I do see a lot a people who have cannula each time so not unusual. 

Have any of you ladies had a cold while on chemo? Everyone seems to be getting this cold that's going round and I wonder what we do if we catch one? 

Well keep well ladies, xxx

Hey Davia,

Ah thanks m'dear, as I'm towards the end of my treatment hopefullly It will start to grow again soon. Yeah i have quite a few wooly hats.  Do you have special scarves? I have loads of scarves that i can try and tie, been looking at some u tube videos. 

Yeah, my hands are itchy in the evening.  i put on e45 cream and take the antihistamine. I'll as about it in my preassesment tomorrow 

Ah yes your bell ringing, bet you cant wait to get back to that :)  Have you ladies put on weight?  I have a bit after xmas and feel rather bloated and puffy cheeks!  I feel like my pre-assessment is a weigh in lol!

Luckily no cold for me, my husband has the sniffles but has managed to keep it at bay. I guess we dose up on paracetomol and drink honey & lemon? 

Hi Ladies.

Yes i think I was an inconvience to the nurse as i didnt have a picc but my veins have been ok so far on the 2 i have had so i will carry on this way unless that changes. 

I am booked onto a look good feel better workshop in Feb,im quite looking forward to it. I have wunderbrow on standby for my brows but am hoping i dont lose those or lashes  (I can wish).

Sending best wishes to all

Linda

xx

I used you tube to get some ideas 9n scarves, mine are just plain scarves, there made from Jersey material, I found them on ebay, I fold lengthwise and pur first quarter on head then cross over at back of neck, long piece I twist to go over top of head, then I use elastic scrunchy to tie together, you may find how on you tube, I much prefer the scarves than wig to be honest, far more comfy. 

Yes I have put weight on, I think the steroids are to blame, I have such a big appetite, I can eat for England lol 

I finish my chemo in three weeks, its weired but I'm nervous, I think it's having more scans thats making me nervous, how silly

Linda I would do whatever makes you feel good, keep having cannula if you find later you need picc then it only takes, an hour to fit but you maybe OK, 

Keep well ladies xxx

Thats great you booked in for next month Linda. I really cant wait for mine.  I did a list of things for me to look forward to yesterday so I can keep positive.  of course no 1 is chemo finishing!

Yeah, i wouldn't worry about the nurse, at my clinic loads have cannulas.  they have those funny hair dryer things to warm your arm up and are always being used.  My veins didn't like chemo and had quite a bit of pain in my arm after 2 rounds.  I had already decided on the port so was just waiting on the procedure date which happened to be delayed.

Thanks Davia, makes sense I'll give it a go with one of my scarves.  Hubby will be impressed as he moans about my scarf collection lol!  Now for you to find your Lood good course.  Did you say you are in Kent too?

Ha ha, me too especially over Christmas.  Im trying to be good now and no snacking!

Ah i get that, every time you have a scan its the fear of what they might find. I think its natural with what we are going through.

I had better heard off I have to be up for my assessment and weigh in which is booked for 8am!

Night ladies

xx

Hi Mich / Davia

Im going to continue with my cannula for the time being, i've worked in Palliative care for 15 years and I know many patients who never opt for a picc, tbh i think the nurse was busy sorting the chaps next to me blood tx and then my nurse wasn't confident in cannulating so i think she was stressed and thats how it came out lol

Talking about scarfs i really need to buy a couple more and learn to tie them, i've managed to get a leopard print looking good on me but it seems to have a long bit hanging if that makes sense. #

I also cant stop eating ladies, i did thinkk maybe this would be y time to shrink down to a size 14, who was i kidding haha my sweet tooth has changed to savoury, didnt realise crisps were so moreish!! 

Linda x

Hi Linda

Look on Muslim scarves on Instagram or you tube, I found loads on there, and they look stunning.I bought a few from an Asian site on ebay really cheap and loads of colours, can match to outfits I love them more than the wig, and I have a lovely crochet beanie hat I got from the hospital, ladies crochet them for us, it's my all time grab and go, so comfy, 

Yes I to have an appetite, I seem to have a savoury tooth to, sweets don't do it for me lol I must have put half a stone on if not more, but they keep saying, don't loose Wight, so I'm being good and doing as I'm told, keeping the weight on LOL  some perks need to be embraced while enduring this chemo

I don't blame you sticking yo the cannula, save you a trip each week getting picc flushed, you can always opt for port or picc later if need be, but I've seen people having cannula right through, my veins are to shy and I end up having veins nutted together, that's the only reason I opted for picc, but I can't wait to get it out  

Hi Mich 

Yes I'm in Kent, just outside Sittingbourne, village called Borden. I do envy you your sea air walks, must feel so good, really bracing. We go to Whitstable now and again, but the walk along the coast path in Broadstairs is great. 

I'm going to find and book on my look good feel good course tomorrow, something to look forward to, great idea to list good stuff to look forward to Mich, you've inspired me

Off to sleep now as had my pax today, night ladies, keep well xxx

Hi Davia,hope you're feeling ok.

Thanks I'll take a look at them Instagram as i am finding I prefer to wear a scarf or cap instead of my wig, I went to the mall earlier with my daughter with my wig on, I thought i'll take a hat just in case and by the time i got there the wig was off lol just didnt feel like me,

As for an appetite i;ve been good all day am now sat with my hand dipping into the heroes tub!

Hope you're well Mich :)

Linda 

Hi Linda, 

I'm not feeling to bad at all thanks, the weekly Taxol isn't so bad, it's the combo that hits me at about day 3, I get very emotional on it for some reason, oh and yesterday my eyebrows decided to shed a load of hair, how strange, my hair on body and head is growing back slowly but now my eyebrows decide to do one, joy, just when I thought I'd hung on to a few strand, hahaha good old wonder brow does the trick though oh I booked on the feel good look good course today, February 17 is the only one I can get on as there monthly and on Mondays, my chemo is Monday, but something to look forward to unless I'm having surgery by then

Yes I get that with the wig, I feel more self conscious with a wig on than my scarves or hat, funny that but I'm always worried the wig had moved or become lop sided lol 

How are you feeling, good to get out shopping or just out isn't it? Hope your feeling as well as can be, keep well xxxx

Hi Mich 

How you doing? Have you mastered the scarf tying?

Hope your feeling well and enjoying those brisk walks along the coast, I've been out walking round a lovely country park near us, bit muddy but lovely to hear the birds and get some fresh air,

Take care xxxx

Hi Mich 

How you doing? Have you mastered the scarf tying?

Hope your feeling well and enjoying those brisk walks along the coast, I've been out walking round a lovely country park near us, bit muddy but lovely to hear the birds and get some fresh air,

Take care xxxx

Hey ladies,

Thank you, i'm doing ok after yesterdays double cocktail.  The drunkeness furniture walking hasn't started yet and i actually went out to visit my sister today.  She helped me with ideas on putting my eyebrows on lol!  I also went out with one of the scaves i got for my birthday and managed to tie it with a rose / knot on the side.  My sister said it is very cute and trendy (she's 13 years younger than me) so must be good!

I'll probably just chill at home tomorrow and take it easy. Ah that's great you have your date now booked Davia, so cant wait for mine.  I cant wear miscara at the mo as hardly any eyelashes left so practising with eyeliner!  I also look pasty and peaky but dont want to end up looking like a clown with too much blusher or bronzer.

Did i say i'm going to Herne bay on saturday to have the fringe of my wig trimmed.  its really in my eyes and i look like one of those shaggy dogs lol!  When i initially fitted it i had hair so she said i would probably have to come back to have it cut.  So I'll see how i get on iwth it, but like you said the scarves are really comfy to wear and i like the variety of all the colours!

Aww and i did a silly thing on Tuesday this week, i missed my appointment with my oncologist, doh!  It was at canterbury and i didn't read the letter probably and thought it was at my hospital.  So very annoyed as only realised when i got to the hospital they said no shes not here today.  I've called to reschedule but they said shes quite booked up to April. Hopefully they can squeeze me in.  No my finest moment eh #chemobrain.

I'm still on a sweet tooth mission but trying to be good with smoothies but i biscuit cupboard is overflowing! I've been quite partial to crackers from xmas with butter though, a few nibbles before dinner haha!

Hope you all well ladies

xx

Hi Mich,

I'm glad you're doing better with chemo. I had my last one on 27th but still feel very week and still have chemo brain. The funny thing is I can hear myself talking rubbish but can't stop it!! My husband says 'no change there' lol.

I have a mamogram and ultrasound on 17th and get the results on 24th, I can't pretend I not bricking it!!!

Davia I also get very emotional some days, it comes from nowhere.

Linda, I didn't have a picc line either. it was never really mentioned until the chemo nurses complained saying I should have had one!!

Take care ladies, love to you all

Sue xx

Hi Mich

Hope your feeling OK today after the combo, I have my last combo on Monday then two pax, one a week, looking forward to getting my picc line removed then ill be able to get back to my bells before surgery

The scarf with rose on side sounds great, if I had known I wouldn't have bothered buying a wig, I have wirn mine a handful of times, and being winter it's so easy to pull on a Wooly hat when going out for walks. 

Hope you get an app with your oncholigist, what a disappointment, I haven't got an appointment with my oncologist, don't quite know when I will get dates for scan and surgery, I'm happy with finishing chemo but also apprehensive for the next journey

I find my taste buds are all over the place, some days I have taste, others I don't like salt then I crave salt, I don't seem to have a sweet tooth thank goodness, I have put om some weight mind lol

How many cycles have you got left Mich? Have they told you what surgery your having? I was told full clearance on lymphs in left arm but no mastectomy, I was suprised with that, I really thought they would do mastectomy, but I think it all depends on scans.

Hope you don't feel to bad on this combo, keep well 

Sending hugs xxx

Hi Sue

They say it takes time to get over chemo, let's hope your feeling a lot better soon, I know what you mean about talking rubbish, when I'm on steroids I can't stop talking lol

I think we all "bick" it when we have scans, I think we always will I really hope it goes well for you,

Hugs xxxx

Hey ladies, 

How's things? I was doing OK after my combo no drunk days but it all caught up with me this weekend and now my body is so tired and achy. I did some walking around harbour on Sunday nothing major but felt it this morning, eso as I had to wake up early for my pre assessment. Felt like I had been hit by a freight train! 

Today I felt rather bleugh and chilled on the couch and read. Wasn't also pleasant standing in the scales and seeing my weight go up by a kg every week! I know small things but they add up when u feel low eh. My face seems to round and puffy, esp now I have no hair! 

I have signed up to another meditation class on Thursday eve, just paxo this week so hopefully be OK. 

I'm feeling a bit apprehensive today, I said to my hubby I can't see an end in sight at the mo and can't imagine myself looking 'normal' again. Do you ladies have that? I guess Its normal as we are still going through it but I just can't visualise myself being back to the way I was.

How u doing Sue?  Do u feel any better chemo is finished? Yeah I deff have chemo brain at the best of times, steroids haven't done much to me this week, hmm think it's this week I'll end up being the duracel bunny!

Thinking of you ladies xx

Hi Mich

Bless you, I know how your feeling exactly, I have sat there and cried, well sobbed and said the exact same thing to my husband, will I ever be me again, it's huge what we're going through and as brave as we try to be the chemo runs us down, especially the combo, it's horrid, I had my last combo today thank goodness, but the paxol has decided to give me a rash, ON MY FACE so no eyebrows bum fluff for hair and red blotchy face but if its making us feel and look this bad, just think what it's doing to the cancer I also get really frustrated that I don't have the stamina I used to have, I've noticed if I do to much one day the next day I'm flat out on the couch exhausted, so don't feel guilty about having a compleat slob out, your body is working hard, that's what the nurse told me when I told her how I felt. Were nearly at the end of Chemo, and although that's bloody great in every way, it's also a bit scary as we have to get on a different bus, surgery and scans, I'm feeling very mixed emotions and that confuses me as I have been crossing of the days to be rid of chemo, but as my friend said, if you can do chemo you can do anything keep strong, know its the combo draining you, I will be in the same place as you by Thursday my hubby can time it down to the minute, every combo cycle has followed that pattern, I get my kleenex out, and just let it go, its a release. You will be you again soon, so I'm reliably told by friend who went through this 6 years ago Lots of big virtual hugs ,

Hi ladies,

It seems we all have the same emotions and feelings. I still have days when I have a total meltdown but unlike Davia mine have no pattern.

Mich, none of us look our best right now!! Although I used the cold cap throughout, I sometimes wonder why I bothered!!! I used to have long blond thick hair and now it is short and really fine. I need to cover my head to go out. Also, hardly any eyebrows on top and none on the bottom. I have been steadily gaining weight, only a pound at a time but it all adds up. I really hate looking at myself it the mirror as it isn't me looking back. We need to remind ourselves that it is only temporary, I know it's no consolation but there is light at the end of the tunnel.

Davia, as you said mixed emotions at the end of chemo. I am so scared that my lump hasn't shrunk as I can still feel it. still, ultrasound and mamagram on Friday and results the following Friday. I'm not sure what will happen if it hasn't shrunk.

Mich, still not BRCA results I take it?? The waiting is the worst.

Stay strong you lovely Ladies, this time next year we will be on our survivors thread talking about our lovely long hair and how all this is now a distant memory.

Love and strength to you all,

Sue

Hi Sue,

I hope Friday goes well, I have that feeling to, what if chemo isn't working but my oncholigist said all the ladies feel like this coming to the end of the Chemo, let us know how it goes and sending good posative vibes your way x

Niknik How did your appointment go, was thinking of you, with my thee boys, there older than you two little ones, I waited until I got the full facts and sat them down and told them, but yours being so small maybe  wouldn't understand, so if it were me I'd keep it very simple, I'm sending big virtual hugs x

Hi Claire

Last EC that must feel great, I to had a very bad time on EC it wiped me out everytime so I feel for you 

I think we're all feeling more emotional coming to the end of chemo, it could be the accumulative effect of all the chemo. Good luck for your opp on the 7th what are you having? I'm due a pet scan after my chemo is finished, can't say I'm looking forward to it, I hate ant scan now, go into anxiety mode, but I'm hearing that you all feel the same. 

Oh bit of posative, I went shopping yesterday, got hot so took my hat off and walked around with just my bum fluff hair, I have a light covarage on head, it's white all over lol I started going gray age 26 but the lady on make up counter said its the in colour, get me lol, shame about the style I said, she laughed but also said it looked nice, she was being kind, I felt a bit naked to begin with but after a while It just felt natural. Hat went back on when I got outside, my head was cold lol

Oh don't talk about weight, I have put so much on and what with the steroids retaining fluid my face looks bloated and red with the paxa side effect rash, I have been told not to diet until treatment is over, I'd find it hard as my appetite is crazy :p 

Well lots of posative vibes to you and sending big hugs, keep strong ladies xxx

Hi Ladies,

Davia, well done for taking your hat off in public, I wish I had the confidence to do that!! I found EC easier than Taxol, it's probably the dose but it's all so unpredictable.

NikNik, have you had your results yet? let us know and we will do our best to support you whatever the outcome.

Caire, great to hear from you. Are you back in the UK. Wonderful news about the tumor. Mine still feels the same size which is a worry but Friday is D-day.

Mich, how are you feeling now? I'm glad to report that my chemo brain seems better. No silly mistakes or talking total rubbish (i hope)

Love to you all,

Sue

Hey Ladies,

Ah thank you for your wisewords Sue & Davia ;)  It does make sense and so frustrating when we get these lows and nothing we can do about it. I'm always trying to be up beat and have things to focus on, even my sisters say i'm the most level headed one of the family (err worrying as i'm also a div, with a chemo brain now) but at the moment i dont feel level headed at all lol!  Weird how when my body suffers my mind does too, it all happens wham bam the same day when its all grey outside!

Chemo went ok today, well except for me passing out!  The nurse had barely finished the pre-meds and i was a gonna! A few of them mentioned "had a nice sleep" as i was looking around and noticed the only one left in the unit.  Hmm hope i wasn't a mouth breather.  At least next week is at 9am, i prefer the morning ones as the afternoon really throughs you out and dont like being the last patient there lol!  I woke up feeling normal this morning an no pain, so as you said Davia I'll be prepared for the weekend, although only Taxol so should be too bad.

Lovely to hear from you Claire, ah dont worry as long as you are doing ok.  Yeah EC is tough on the body, my 4th one took my ages to recover.  Great news though on your tumour, whoop whoop.  I must chase my next appointment, as i'm a *** and went to the wrong hospital.  I'll ask again at my pre-assessment on Monday.

Ah thanks for the advice on meditation video, I'll take a look.  I'm going to the glass bath meditation tonight, on me own as my friends cant make it.  Oh well at least I'll get to chill, not sure i'll fall asleep with the steriods bounching around but sure it will do me good. 

When do you fly over?  that's good you have a date for your surgery.  I didn't work out my treatment dates very well as forgot i have another two taxol after the combo, doh.  So will take me to the end of feb. Although dont have all the dates yet, they only give me out a few at a time in case they change. Ha, ha cheeky docotor, i can just imagine him saying that. 

I did go out without a hat or scarf on sunday!  never though i could, but i was so hot and botherered I couldn't be 'bothered' what i looked like lol!  It was only a wetherspoons, a rather busy one but hey like you said we are going through so much at the moment we need to do what feels right. 

Hows everyone feeling today?

xx