'June Jewels' - Precious and shining through :)

[Melrose15]

Oh God Jayney poor you. Tax certainly brings a different set of side effects. Think i'll just run for the hills and stay in France!!
Hopefully the dr will give you something for your mouth and it'll pass quickly. Big gentle hugs coming your way xx

[Lucy_BCC]

Hi Jayney

I am sorry to read that you are feeling so low, it may help to call your chemo unit for advice on the side effects, you are also welcome to call our helpliners to talk things through and get some support. Lines are open 9-5 during the week and 10-2 Sat on 0808 800 6000

Take care

Lucy

[jayney234]

Well so much for Tax being better than FEC! last night the full effect of the se's hit me at midnight. I was so scared. Everything aches and my mouth is full of sores and my throat as well. I feel totally overwhelmed this morning and feel I can't do this anymore. I really don't think I can do 2 more sessions knowing what's coming. I feel so ill and weak I can't bear it.

[Melrose15]

Half my post disappeared last night! Grrr!
Obviously I was sending you all love and hoping all those at the bar got home safety and hangovers are minimal.
Adieu mes amies brilliantes! Xx

[YB54321]

Wow a whole Friday with no Jewels at the bar!

Emma - have a fab holiday - you deserve it x

Joan - hope you're on the mend soon x

Marion - glad you were ok at the bar today - last one next time! Xx

Fiona - hope you're feeling a bit brighter x

Sandra - thanks for signing the petition x

sorry all for short posts - no sleep since about 3am yesterday and I'm beat. had a bath this evening and site where I injected Neulasta has started bleeding a bit! I've put a dressing over it to keep it clean and am hoping it will have stopped by the time I wake up (thats if I ever get to sleep!)

night lovelies x

[Melrose15]

Hi Jewels. Well all packed a ready to go! It's been a bit emotional as I'm struggled for what to take. Haven't got a cozzie as not ready to bare all with prosthesis and can't swim cause of pic. So many of my summer clothes are low cut and show too much non clevage and ive put on weight. On the plus side i wont have to worry about fizzy hair in the heat and haven't had to pack shampoo, conditioner, hair dryer, straighteners, hairbrushes, serum, hair bands . . . More room for shoes 😉
Joan sorry to read your in hotel nhs. Keep in touch and hope its a quick recovery xxx
.
Nic glad hols are going well besides emergency in the restaurant that is! Theres never a dull moment in your life! I'm sure that's why you always seem calm and to be coping on the surface but I'm sure under it all your 'little' legs are going ten to the dozen

[Maxie]

Chelle petition signed!....well done for creating that, its absolutely ridiculous to be penalised for having health cover.
The wig company I ordered from are all over the internet & trading under two different names, both I now find out are based in China. Have e-mailed them but no response so far & not holding out much hope tbh. xx

Joan just a thought for you, the medical registrar said to me last night that low neutrophils are actually a good indicator that chemos doing its job really well, (maybe not much comfort to you at the mo being stuck in hosp!) but I hadn't thought if it like that before....just thought I'd share that with you, hope you get some sleep tonight..xx


Quiet on here tonight, hope all you Jewels have a restful night...xx

[YB54321]

Sandra - I dealt with 1 bad site for wig refunds - just contact them and don't accept their 1st offer. If you paid by credit card they should have to refund you anyway.

The petition can be accessed here:

http://epetitions.direct.gov.uk/petitions/53762

[Maxie]

Glad all went well Marion...hope you get a good nights sleep!...xx

New wig arrived & what a disappointment....looks like a dead ferret & makes me look like Justin Bieber !!!:-( Looked online & the wig company I ordered from has had loads of complaints regarding quality & not being able to get refund!...all things I should've checked out before but very professional website...oh well maybe the dog'll chase it round the garden!!
Talking of wigs Chelle where do I find the e petition Ive heard mentioned?...would like to sign it...xx

Sandra xx

[YB54321]

• Jackiebee - Jackie 19/8 (cycle 3)
• ethel1 - Elizabeth 19/8 (cycle 4)
• Esther_1986 - Est 19/8 (cycle 4)
• Meggy-moo - Agnes 21/8 (cycle 4)
• MarthasSOS - Martha 21/8 (cycle 5)
• pat_1949 - Pat 22/8 (cycle 4)
• Deedee215 - Deedee 22/8 (cycle 4)
• Flip Flop - Faye 22/8 (cycle 4)
• March13 - Ann 22/8 (cycle 5)
• LaineyK - Lainey 23/8 (cycle 4)
• Linsey 50 - 23/8 (cycle 4)
• Trish1303 - Trish 23/8 (cycle 4)
• ambercatz - Jan - 23/8 (cycle 4)
• PeachyPal - Emma 27/8 (cycle 4)
• Cassie1 - Jayne 27/8 (cycle 5)
• Izzy1969 - Izzy 27/8 (cycle 5)
• Maxie - Sandra 27/8(cycle 4)
• pointy - Debs 27/8 (cycle 4) FINAL
• flippantfox - 27/8 (cycle 4)
• Artemis17 - Vicki 28/8 (cycle 4)
• Suffolklady - Cress 28/8 (cycle 4)
• cazzer1970 - Caroline 28/8 (cycle 4)
• Fimbo 123 - Joan 28/8 (cycle 5)
• titus4t - 28/8 (cycle 5)
• Glasgow Girl - Fiona 29/8 (cycle 5)
• Melrose15 - Emma 29/8 (cycle 4)
• NicJ - NicJ 30/8 (cycle 5)
• Gussie-WW - 30/8 (cycle 4)
• Janet C - Janet 30/8 (cycle 4)
• Katherine10 - Katherine 02/9 (cycle 4) FINAL
• jmeg - Jill 02/9 (cycle 4)
• LinsLleisio - Lins 03/9 (cycle 5)
• BeckyJoan - Becky 03/9 (cycle 5)
• jayney234 - 03/9 (cycle 5)
• ChelleB15 - Chelle 04/9 (cycle 5)
• Satsuma - Fi 05/9 (cycle 4)
• Marionblue - Marion 05/9 (cycle 6) FINAL
• Spurs79 - Claire 05/9 (cycle 5)
• TaylorJ - 05/9 (cycle 5)

[Marionblue]

Chelle - Forgot to say, next cycle is September 5th.

Marion
XXX

[Marionblue]

Tax / Carboplatin 6 cycles Herceptin 18 cycles - Cycle 5

Evening Ladies

Got home at 6 p.m.. All went well today, they finally have my prescription sorted out. Fereling acidy all ready and tired. Nurse gave me hydrocotizone cream for my sore hand and they put the canulae in the side of my wrist. They put it there on my first cycle and it gave me a heck of a bruise but I'll see how I go.

Sandra - Glad your out. Must have been annoying but better not to take a risk of it being something serious.

Joan - Sorry your in. Hope they sort you out and your able to be back home soon.

Fiona - So sorry you have been feeling low. Enjoy your shopping trip and then make sure you have plenty of rest.

Didn't get much sleep last night because of steroids so I really need a good night tonight. Catch up tomorrow.

Marion
XXX

[fimbo123]

Hi Jewels, seems like they won't release me for a couple of days as I'm severely neutropenic. It's a shame, as an oncology ward has never been top of my list of places to stay ;-). I will certainly appreciate my freedom when I do get home.

Have a good evening lovely ladies xx

[Izzy1969]

Sandra and Joan - sorry you've had to go into hospital, hope you won't be kept in too long and that you feel better soon. Sending you both big cyber hugs. And Fiona too, sorry you're feeling down. You're usually so upbeat so hope that you feel better soon as well. Hug to you too. xxx

[Maxie]

Awww Joan, sorry you're incarcerated at Hospital NHS 😞 its not nice but I hope theyre treating you well!
Re the lymph nodes ....at my biopsy was told no signs of enlarged lymph nodes then during surgery they found sentinel node affected so removed the lot!....during the time waiting for results of how many I convinced myself that they'd all be affected etc etc but turned out to be just two, (would rather it be none of course) but just goes to show they really can't tell until they do the surgery so please try not to dwell on it too much, easier said than done I know but you'll drive yourself crazy otherwise....big hugs to you & hope you escape soon...xx

[fimbo123]

Sandra, you are not alone - I came into A&E too with a temp last night. They can't find any obvious infections but my neutrophils are 0.4, so I'm having IV antibiotics and being kept in until at least tomorrow morning. The ironic thing is that, aside from the temperature, lots of SEs seem to be a bit better today, so a bit frustrated I have to spend the day in hospital. It makes you feel so out of control, doesn't it?

Fiona, just a quick one on the red skin on your foot - I have the same thing on my hand and it's a classic Tax se. The oncology nurse this morning said to tell my onc at the next appt because he might reduce the dose. Not sure how I feel about that. So sorry you felt so down yesterday. I think we all feel like that from time, I know I have moments of utter despair most days. Big hugs from me.

Izzy - ditto re lymph nodes. We are still in the waiting room with the unknown, aren't we. I knew I had one enlarged node, but the biopsy was inconclusive. At my last onc appt, he said the MRI still showed enlarged nodes (ie plural). When I asked him how many he wouldn't tell me, saying it was an irrelevant question until they knew after surgery. So I have convinced myself it's most of my nodes... I wish I knew.

Running out of energy to respond to everyone else, but good luck to those at the bar, and have a great time NicJ and Emma on holiday x

[Maxie]

Hi Ladies,

Escaped hosp near midnight last night....seems Im a 'Medical Mystery!!' Had temp of 38.5 which didnt go down the whole time I was there, very impressed with the treatment I got, was put in isolation & given antibiotics through a drip then had ECG, Chest x-Ray, loads of blood tests which all came back clear (?) neutrophils were borderline at just over 1.0. Anyway after initially being told by Doc numb 1 that Id def be in at least overnight, Doc number 2 said you're free to go with some antibiotics & paracetomol!! Temp back to normal this morn, all v weird & was v panicky when temp wasn't dropping but hey ho all seems ok now. Lovely 2nd Dr btw (not so much in looks but bedside manner Chelle & Cress!)) came into room, held my hand & said "How are you feeling my lovely"...don't get that often on the NHS & I thought it was really lovely 🙂


NicJ loving reading about your Greek hols, sounds a beautiful place. Very scary re the choking in the restaurant, like others have said can't believe none of staff etc intervened. As for feeling guilty about us thinking you're coping etc, I still think you (& all our other Jewels )are coping with all this fantastically, maybe you'll only realise how well you've actually done when you look back on all this next year. It takes guts to get on a plane & travel all that way for the sake of your boys & OH having their hols so don't underestimate yourself your doing great!!...xx

Emma wow what a lovely pic of you (won't say you look well 🙂 but you def look glam!) & your neice, & great story about her uni achievements too, well done to her!!..enjoy your hols with your boys...xx

Fiona, so sorry you're feeling so down at mo 😞 but you are entitled to, we can't all be upbeat all of the time. Your mum will understand how you feel more than anybody so please don't feel guilty lovely....sending you hugs & hoping you feel brighter today,:-) oh & the heel thing, yes like Chelle mentioned my BC friend suffered with very sore feet & hands on Tax & swore by aqueous cream ( you can get massive tub on prescription from docs) she washed in it & slathered it on daily & said it helped massively, maybe worth a try?..xx

Chelle glad infusions all went okay , must be weird waiting for the delayed s/e's, not like the first chemo (fec or ec) where more immediate...xx

Vicki, fec 3 has hit me a lot harder than the other two as well, must be the cumulative effects,glad you're feeling brighter now, knew you must've been suffering to miss your Zumba!! 🙂

Jackie, your daughters poetry themes made me laugh, reminds me of my two when they were little (although they still have toilet humour now lol!) Enjoy your well deserved night out, get that wiggy on & strut your stuff! 🙂

Well must get up & about now, YD here & breathing down my neck as Im typing for some 'Mum attention'!

Sandra xx

[YB54321]

Vicki - 1st Herceptin was done over 90 mins and then they did the Tax after it. I had to stay for 6 hours after it was admined to monitor any SEs so expect a long day on 1st Herceptin!

Jackie - hope you have a fab night out x

Emma - best of luck for son and results - love your new pic x

[Guest user]

Hi everyone
sandra, hope you escape today and are ok.
NicJ- what a frightening event in the restaurant! Hope he is alright and you have all recovered from the trauma. I am envious of your trip to Greece, it looks beautiful. hope you enjoy the rest of your time there.
Fiona I'm sorry you are having a hard time, about upsetting your mum- if I was her, I think even at 86 I'd want to know if my daughter was finding things tough and I'd be glad if she felt she could open up to me. I do understand how hard that must feel though when the relationship changes from her looking after you to you looking after her. But I bet she's a tough cookie just like you, in her core. Sometimes breaking down and having a good cry is all there is left to do. Big squeezes X
Marion, my youngest has just turned 10, yes Fiona she's the poet (though have to say her more typical poems usually involve words that rhyme with bum, poo, wee etc etc). she's a real character and really helps me through the tough days.
good luck to your son Emma on his a level results. I am a uni admissions tutor and this week would normally have been a crazy one, with today in particular being a marathon of phone calls etc. instead I'm at home, doing very little, feeling rather helpless, and hoping that the work I put into admissions earlier in the year pays off and we don't have too many (or worse still, too few) students...ah well, these things seem relatively trivial, now. Your picture with your neice is lovely, and well done to her on a 1st from Cambridge!
Dropping the kids off with my mum overnight, so OH and I can have our posh night out (cancelled from last week). We are off to a restaurant called Simpsons in Birmingham, I may even shake the dust off my wig as its so posh 😉
hope all at the bar today do ok xxx

[NicJ]

Am feeling very guilty that you all might think Im busy and coping etc. and really am getting angst ridden about needles.
Think it is easier in a way to have to get up and deal with the boys, self motivation is something I badly lack. The routine went totally out of the window when boys finished school. Used to get them up and settled at school, make dinner for that evening and possiBly double amount so didn't have to cook following day, make healthy lunch for me and then have a nap that sometimes went on until had to get boys from school again. cope with evening activities, scaled down for me, fill dishwasher and then bed again. Anything else has been a real struggle and only do able if haven't slept all day just part of it. Trying to do what I call work, dealing with education authorities, running my lititle local charity and parish council stuff (major development on way) have just gone pretty much out the window. I really admire those of you who work or have to motivate yourselves much much harder.
had to have a hen put down recently after she broke her leg cos knew I couldn't do the caring she needed (now down to 7). All the SE's are very waring too especially the silly ones like dry mouth and bad taste.
i love a good British wedding, uptight bride, family feuds, embarrassing best man speech, inappropriate frocks and there has to be a fight at the disco, although missed a very classy gay wedding at Ludlow castle by coming on holiday, all Jimmey Choo shoes for both the grooms and lots of Botox.
hope Sandra is out of hospital, those at the bar are not bingeing and that all those havent heard from in a while are just lurking and not poorly or too down.

villa owner commented on the amount of water we ve been getting through until I owned up to flushing the loo so much cos of all the weeing and bowel movements - did he go red with the heat?
Greece is extremely hot, we all tried the local town (Nidri) for postcards and lilos for pool, full of bad tempered Greeks and Italians while we tend to go for the "smile and wave boys" (Madagascar film, the penguins at the end) decided to retreat to villa and stay in pool. Or at least I'm back to bed for at least a couple of hours, lunch ready when they are thanks to local butcher and picnic for beach when it gets cooler . Nap time.

nicj
xxx

[Melrose15]

Good luck at the bar today girls x
A levels results today! Luckily my OS isn't relying on them for uni as having a year out but still really nervous for him. Gulp!!
In the pic I'm with my niece. She's had her own journey as at 19 she was 5 1/2 stone and admitted to hospital with anorexia. She had to leave uni and it took her a good 18 months to recover. She went back to uni, Cambridge no less, and graduated with a first last year. So proud of her 🙂
Sandra! Have you escaped? X

[artemis17]

Morning lovely jewels...

Well finally feeling back to normal, not sure if it was "just" cycle 3 accumulation, the bone marrow jabs or something else, but i was really struggling with tiredness and feeling hungover since last weeks chemo. I phoned my unit (didnt have a temp or anything tho) and they said that yep thats how it feels usually from cycle 1 so because ive been so well it seemde harder to deal with!. All i can say if that was how most people felt after cycle 1 then i take my hat off to you. Its hard to explain to non BC people as i didnt have any ulcers, sickness, any visible signs of illness, but i felt dreadful and though still just about managed working, missing Zumba for the first time ever since Dx shows to me i was feeling rough...

Anyway, onto everyones stuff, so good to hear people are getting away and doing nice things, whether concerts, trips out or hanging out with family.
Sandra, hope ypou get out of hotel NHS today, and that you get back to full strength again soon. Reading your posts about parcels etc i have a list of things i "want" rather than need and at somepoint i shall have a shopping spree, its so easy online to shop, non of the hassle of in & out of changing rooms etc, plus its not real monsy when you dont see it lol ;-)!!

Emma, have a ball in France, you deserve a bit of fun after last cycle hitting you so hard, very nice pic by the way, you certainly do glam well!!. I actually have a wedding 3 days after my 2nd Tax, but really not sure if i will go(other issues re family etc) when im not likely to be feeling too good, based on this last cycle anyway.

Izzy & Joan, thanks for all the info re "T", it seems to be giving everyone the same se's, which wasnt the case with the first regime, we all had different amounts/types of things hitting us, whereas T is all about the aches, pains and mouth...I dont get too much discomfort from the bone injections so was naievely hopeful that that wouldnt be the issue with T, but am losing that thought rapidly. Izzy enjoy Nice, sounds very cosmopolitan, especially with headscarves ala Audrey Hepburn!!.

Fiona, sorry youve been down too, youre one of the most prolific and cheery posters, so doubley hard on you to be off the board. As for getting upset in front of your mum, im sure she would worry anyway as we do about our kids no matter how grown up they get, and you shouldnt berate yourself for having a low moment, as a mum you want your "children" to be able to let it all out. It is hard when we see ourselves as the "adult" to aging parents(tho both mine have passed away) i imagine you dont want to worry her or have her feel helpless etc, but we always try to prevent those closest to us from having any stress/worry etc not just re BC so dont feel bad, we all have our moments we need our mums/dads, i just wish i had mine... Anyway, enjoy the shopping if you can, if you dont go then hopefully you'll feel up for it before she returns to Uni.

Chelle, youre motoring through it all, hows the Herceptin go through(ie time)?. I dont start mine til cycle 5, as gotta have T on its own to monitor side effects first. Youre very focused posting mid dose, i do nothing but moan about the cold cap and needing a wee lol...Hope youre doing ok today, albeit sleepy!!. Im dreading taking steriods.

Nicj, hope you have a great time away, scary re your son but you all seem a very capable bunch and i hope evreything else goes well. Enjoy the sun too, its dampo and clammy here. Oh ive been asked to consider the Herceptin trial, i was thinking about it, but now ive been told my cancer is very aggressive and i have 30-50% chance of reoccurance in 5 years without RT, and 20% overall, i want to do everything i can, so will stick with the year. I will have a portacath fitted to make it all easier anyway. (just to say im convinced my cancer was set off by 15 years on the pill)

Phew, well thats all for now but will catch up later. i have my manager popping round so better get out my PJ's lol....
take care lovelies
xxxxxx
ps edited to say posted at speed so sorry for all the typos..

[YB54321]

NicJ - yep extra steroids are because of the Tax not the Herceptin.

Fiona - I've read on here that Tax can could problems with skin and skin peeling on hands and feet? Just thought I'd mention it in case it's anything to do with your heel. Hope you're feeling bette today x

I've had very little sleep so I took my steroids at 3:30 when I woke up and I'll be taking last ones at 2pm as I need some sleep tonight. Other than that I feel fine, bit of acid but the tablets keep it at bay. Just need to find a patch on my tum that isn't bruised already to do the Neulasta this aft!

catch you all later x

[Glasgow_Girl]

Hi everyone

Was on a big downer yesterday, so didn't want to depress you all. Went to GP in the morning, had good chat, she is very caring and a good listener. Really went because of sore foot, bizzare, left heel very sore, tender, red and very hot, just appeared from nowhere on Tuesday morning. She didn't know what it was but has given me antibiotics, if doesn't clear up will need a blood test, she mentioned gout (thought only fat old men who drank lots of port got that) but she wasn't at all sure.
I felt worse yesterday than the previous few days, so staggered back from Dr and spent day on sofa. My Mum rang during the afterrnoon, caught me at a bad time and I ended up sobbing over the phone. I felt so bad afterwards, she is 86 and I can normally put on a brave face for her. She is a BC survivor so she does understand, but if I think how I would feel if it was my daughter, it was unforgiveable of me to lose control like that. I need to compose myself and phone her today, try reassuring that I'm ok.

Chelle - what are you like, posting mid-chemo yesterday? Hope you still feeling ok.

Marion and Taylor J - all the best for today girls.

Joan - re the Docetaxol SEs, i'm very similar to you. Also got the sore mouth, feeling of swollen cheeks, both sides of tongue starting to ulcerate, lump at back of throat, rubbish taste with everything tasting horrid. Also got sore finger-nails, thumbs and forefingers mainly. Yes to exhaustion, exhaustion, exhaustion!!!! Muscle/ joint ache not too bad, bearable with Co-Codamol. I agree that 'normal' temp seems slightly higher too. I don't have a sore neck...... yet!
Me too on the sofa most of the day since Sunday. Am attempting short shopping trip with daughter this morning. She needs new bedding and some kitchen stuff for going back to uni. I had suggested today when I felt fine last Friday, don't want to let her down. Hopefully we can get everything in the one place, then come home - weve got a list, so will just concenrate on that.

Gus - the gig sounds amazing. Daughter and I both Philip Glass fans, didn't realise he was part of it - we saw a showing of the old B&W Bela Lugosi Dracula film, with Philip Glass and 2 other musicians playing live music which PG had composed to accompany it. One of the best things I've ever been to. Read the review link you posted, gig sounds fab.

Sandra - oh no, you in hospital, hope you get home this morning lovely. Big hugs xxxx
I agree that MX and ANC ops were a dawdle compared to chemo. Interesting thought (also Joan and Gus) about emotional trauma being a trigger for BC, that could apply to both me and my Mum.

Marion - what a cutie grandson! The Money Pit, think I've seen it years ago, but will add to my Lovefilm list for a laugh. Watched Skyfall with daughter last night, saw it at the cinema first - enjoyed again and I would defo run off with Daniel Craig, those eyes...

Emma (melrose) - glad you made it to the wedding and well done putting up with the comments we all hate. I had sore mouth with FEC but could still taste, no taste with Tax.
Bon Voyage! Good for you taking the "just shove the boys in the car" approach. Hope you have a lovely time (sorry couldn't help sniggering at Condom, how immature am I?)

Izzy - agree Tax prob worse that FEC, but I did do some mega moaning about nausea with FEC, so actually all chemo is just s**t.

Jackie - your little girl (is that the poet?) is a sweetheart.

NicJ - lovely to read your post from Greece. Love your honesty and always amazed you find the time to post and share in your very busy life. Hope you're relaxing at the villa while your boys are busy diving and the Greek salad is tasty while also providing medical benefits. Just as well OH is well-versed in first-aid, what a scary experience with the choking, surprising no-one helped out. I know the Greeks are laid back, but that's a bit much.

OK, up, showered, quick shopping with daughter, then sofa.

Fiona
xx

[NicJ]

Chelle
are you getting extra steroids cos you are doing chemo at same time? No one mentioned any thing about other meds on top!!!!
hate the steroids - red face and upper body and bloating! Panic setting in!

[YB54321]

NicJ - hope you enjoy the rest of your jolly. I asked my onc about the 6 month Herceptin trial but its not being offered here. He did mention the injections though which I'd be all for especially because I've been told I have to stay on blood thinners whilst my portacath is in and I wouldn't need the port if I could inject it, plus I'd assume its much quicker to do which I'm all for! Had my 1st Herceptin infusion yesterday and so far so good. Felt a bit breathless for 1st 10 mins but it passed and then I felt fine.

The extra steroids are not good though and I've been awake since 3am! Hope I can cut them down next round!

Sandra - how are you doing? Hope you escape if you're feeling better x

Hope the ladies at the bar get good service and minimal SEs x

[NicJ]

Dear All
was about to be all upbeat and positive, then caught up with all the posts and I don't dare just in case I get struck by a million thunderbolts!!
Maybe I am just immune to the crap things people say after 14 years and counting of living with Autism. But then thinking back wasn't I one of those dim people who didn't know what to say But had to say something? When asked how I am I tend to be honest and say with a big smile "you have no idea of the effort I have to put in to be here/talk to you or how much I am going to pay for it later" .
well here I am at silly o clock in Lefkas.
Considering we started travelling the day after chemo, the journey went well. Stayed at the radisson manchester, (looked out for you Chelle) so that 7.00 flight was not bad. Had wheelchair assistance all the way. We normally get through security pretty quick because of the boys, but because people don't get autism we usually get bad looks, this time all pity and smiles, but then I was looking pretty grim with cannula bruising and support stockings on phlebitis arm and legs! Amazing how many people talk over you when in wheelchair.
wore face mask on plane, was much too big, but best on safe side. The airport in Greece was amazing I was expecting queues but it was really clear.
apart from couple of trips to tavernas have spent all time at villa with A/C on just recovering from trip and acclimatising to sun. Boys have been off scuba diving and hiring a boat. But the view is pretty good and entertainment provided by Germans and their water toys on an expensive private charter yacht. Shared the bay with Leonardo Di capreo's yacht last year.
water retention and bloating has been bad but apparently a diet of cucumbers, tomatoes and low fat dairy is diuretic so bring on the greek salad, can't resist the little pies as well though.
had scary moment at taverna couple nights ago. Twin 2 swallowed a whole slice of cucumber (he insists it was the octopus), started choking on it, OH had to do very dramatic Heinrich manoeuvre just as Simon was turning a bit blue. Fortunately he forced the cucumber out (green so definately veg) amidst much grunting and groaning - the rest of the customers and staff - stared silently until drama was over and then just went back to their food! Obviously a near death experience just isn't dramatic in these parts.
Emma sorry to hear you ve been feeling rough, and to all the rest of us who really are feeling the impact of treating this disease. And to Maxie - sounds calm but it is a bit scary being admitted.
sympathy with all those with crap veins, am starting to get needle averse - was very wimpy last time needle went in for cannula, which of course was why I opted for a Picc line grrrrr! Bruising is spectacular as ever. Am taking longer to plunge in the injection for bone marrow stuff and am dreading the herceptin.
But I have been offered the chance of a clinical trial. Either one looking at receiving herceptin over either 6 months or a year but don't know until accepted which length would get. Or going for self adminstered subcutaneous injections rather than intravenous. WouLd still need to go to hospital every week for injection and be supervised, but would it be better than attacking veins? Also the thought of benefitting someone in future - travelling to the hospital for me can be over an hour each way and since so fatigued is a real strain.
any thoughts anyone.
Thinking of all those facing another round and those who are missing in action.
NicJ
xx

[Melrose15]

Sandra hope you get early release from A&E. Hopefully you'll spot Ann's dishy doc ☺ Big hugs xx

[Marionblue]

Taylor, Fi and Claire busy day at the bar tomorrow. Hope we all get home without any problems.

Sandra. - So sorry your in lock up. Hope its not serious and they let you out soon. Love and cyber hugs.

Marion
XXX

[YB54321]

Aw no Sandra hope they sort you out soon. That must have been 1 heck of a parcel from Next!

Lots of love sweetie x

[Maxie]

Evening girls,

Currently residing in A & E on a drip...been here since 7 pm with high temp 😞 will be in at least overnight while they try to get to the bottom of it...must've been the excitement of my parcel arriving!!
Am looking out for nice docs for Chelle & Cress to pass the time....Sandra xx

[YB54321]

Good luck to Marion, Fi, Taylor & Claire tomorrow x

Still feeling good but dreading the SEs kicking in after Neulasta tomorrow 😞

So tired as not slept all day so off to bed x

[Marionblue]

Izzy - I don't normally eat much and usually leave food on my plate. Not now, I could graze all day as well as eat all my meals. I really hope I go back to normall when drugs are finished or none of my clothes will fit.

Jackie - How sweet is your YD. How old is she?

Emma - Isn't it so depressing that just as you start to feel human again you have to fall down the pit of of SE's again.
I have been lucky with gums but have certainly had foul taste in my mouth for 2 weeks after cocktail. I think thats why I keep eating, just trying to get rid of the taste.

Well I'm off to bed as early start for cycle 5 tomorrow. So not looking forward to it .
Get back to you tomorrow. I hope they have my prescription right tomorrow and I won't have any horror stories to report.

Marion
XXX

[Izzy1969]

Oh my goodness, I just typed the longest post and its disappeared. Grrrr, grrrr and grrrr............!!!! That's the first time that's happened. Oh well this is going to very much shorter but here goes.....
Tax hit me harder than FEC. I know I got off lightly with FEC - with this lot I struggled from days 5 to 8 with muscle ache/pain, stomach pain and upset, feeling bloated, jaw and neck pains, no sleep, strange taste, very sensitive teeth and feeling very tearful. Having said that, I only resorted to painkillers once because it was bearable. Think I can manage it another couple of times, but that's it ok?!!!! I just can't wait for it to finish.
Emma - sorry you've been feeling bad and glad to hear you're on the mend now. Have a great holiday in France. We're going on Sunday to Nice. It's only a 2 hour flight but Ihave to wear flight socks! I am worried about possible germs on the plane, but both my son and daughter have colds at the moment so I'm more likely to catch something at home!
Marion - love the wig.
Sandra - good to hear you've been having some retail therapy, you deserve it. Thanks for the reassurance about surgery, I'm really apprehensive about it so it's reassuring to know it's not as bad as chemo.
Chelle - good luck with TAX, it's definitely doable.
Gussie - glad you had a good time at the concert.
Cress - sorry you're missing work and your holiday in France. This time next year all will be so different. Sending you a big hug.
Maxie - didn't see the Daybreak thing, but if I had to blame anything in my case it would be either taking Dianette for too many years, or being a worrier!! - about anything and everything and I did have a stressful year last year.
Fiona - love reading your posts, you're always so chatty (and organised)!
Jayney and Joan - I share your worries about having chemo first. I find it difficult to accept ladies being diagnosed now are still having their surgery before me. I just want rid of it. The lump doesn't worry me so much as that will be gone with surgery, but I obsess over my lymph nodes. My under arm does ache a lot - does that mean the chemo is working or isn't working? And what makes our cases different to the ladies who have their surgery first? Joan, I think you mentioned being on this thread for ages yet - well so will I be!! As you said, we'll be with each other every step of the way......
Finally, has anybody noticed their appetite increased? I get so, so hungry. Went to Pizza Express last night for son's birthday and ate vast amounts. In fact hubby said if they hadn't all had their own plates, I would have eaten everything on the table!!!
Thanks for helping to keep me going Jewels, as always I love reading your posts.
Sending hugs to anyone out there struggling at the moment xx

[Guest user]

Just a quick one, had reflexology session this morning and slept all afteroon, feel very groggy today and I'm in week 3- what's that all about? Youngest daughter woke me at 4.15 saying 'i was going to make you a cup of tea but then I remembered I don't know how to make tea so I brought you a biscuit instead'. I don't know why but it made me laugh and cry at the same time.
Emma have a lovely holiday in Condom hee hee hee.
Hope everyone not suffering too badly, staying positive and looking SO well, 😉
Jackie x

[Melrose15]

Hi Jewels! What a weird few weeks. I was on top of the ladder after my few days away in the Lakes then FEC3 and wheeeee! down that snake i went landing with a great big thump at the bottom! Emend definately didn't do it for me and if its 24hrs of vomitfest vs 9 days of fatique and nausea i know which i'd rather 😉 I've fitted in quite well at home with the 3 boys being off school and morphed into a teenager barely moving between bed, sofa and fridge for a week. Anyway getting slowly back up the ladder now Day 14 although still a little fuzzy headed.
We celebrated my nephews wedding on Saturday so I dusted off Eva wig and donned my fasinater. The reception was at Kew Gardens, very posh. I managed to last till 10pm leaving the rest of the family to land back at the hotel around 1am. It was the first time a lot of the extended family had seen me since my dx and yes i had the 'Oh don't you look well' and (sorry Jill) 'Remain positive!' "You're halfway there' I managed to smile through gritted teeth and change the subject but yes! What did you expect me to look like....i'm at at wedding fgs. I've make up on, wig on, smile on, hold it all in pants on, best frock on....if they'd seen me the day before crying into my pillow.....grrr!!
Well thats my selfish rant over. I have been reading all your posts and responding telepathically...hope you got my messages of love, support and heard my little giggles. CHELLE!! i can't believe i missed a 'real life' picture of you and of Marion's wig. Gus i'm so pleased you got to go to see Patti. Those being hit by the Tax train..hold tight. This yucky mouth thing sounds horrible is it worse that the sore gums and no tastebuds on FEC?
Fi - Sorry to read of your loss. So much emotion to deal with at this time in our lives. I hope you have all the love and support around you that you need. Big Hugs xx
On a positive note I'm off to France on Friday. We had booked the accomadation BBC and i mentioned it to the onc last week and he said 'go for it!' So we've booked the tunnel (Expensive last minute. Ho Hum!) and are driving to south west France, Condom (atleaset it'll be safe there!!) to join my brothers and their families. I'm not very organised but as long as i can tuft the boys out of their beds, sling some clothes and toiletries in the car, we'll survive. I admire Nic and Izzy going on a plane. So my next chemo and first Tax is now 29th.
Has anyone heard from Lins or Becky? Its been a long time since they posted.
Take care my shiny ones...stay posi......;@ xx

[Marionblue]

Afternoon All

Hate that photo of new wiggy so changed it for one with my own hair with youngest GS taken befoe BC rubbish started.

Chelle - Well done. Hope the SE's stay away.

Fiona - I do love a feel good movie. Mamma Mia does it for me at the moment. For a laugh, the funniest film I've ever seen is The Money Pit with Tom Hanks. I don't usually like slapstick comedy, but this has me in fits.

Joan - My temperature varies between 36 and 37 on Tax. Usually arounf 36.5 by end of second week.

Sandra - I only get pains from waist down from stomach injections. Hate back pain.

Gus - Glad you enjoyede Patti Smith, she is amazing.

I have planned to wear purple nail varnish for tomorrows cocktail. OH said you need a purple top to go with that so I've been to Llandudno and bought a pretty purple top with butterfly pattern. Difficult to know what to buy at the moment as it has been quite chilly for a couple of days but its quite humid today.

Jayney / Joan - I agree with Sandra, op is easier to cope with than chemo. I probably would have though it was worse if I hadn't had to do chemo, but when I started on this, I almost forgot about op. Mad but true.

Catch up later. Got nails to paint.

Marion
XXX

[YB54321]

Well 1st tax done and touch wood still no immediate SEs (am sure they'll kick in over the next few days!)
got to stay for 2 more hours monitoring but looking forward to a kip as was wide awake in steroid heaven from 4am!

Catch you all later x

[Maxie]

Afternoon Ladies,

Joan so good to hear from you but not good that you're suffering the horrid Tax s/e's 😞 It must seem like a very long journey for you. Speaking personally the op & ANC were really nothing compared to chemo...hoping the same for you, hang on in there sweetie....xx

Jayney hope s/e's get better for you, stomach cramps sound nasty. Know what you mean about reading some scary stuff on here sometimes. I read something last night & really wished I hadn't 😞


Gus sounds like you had a great time at the concert!....good that it was seated too. Been cooler here too last day or so, not resorted to heating on yet but cardi on for first time in weeks, also woke up in the night & my baldy bonce was freezing, sleep caps at the ready I think (another great look -not!!) Interesting theory re our immune systems etc after stressful events, Im more inclined to believe that too rather than diet etc. Emotional trauma shouldn't be underestimated as a big factor in our physical health.
Well done for making yourself get out with doggie, its hard sometimes to get the motivation even when we kniw it'll make us feel better 🙂


Chelle get you messaging mid infusion!!!!....(& you updated the list before you left!) glad part 1 gone in ok for you, hope part 2 the same lovely...xx


Fiona hope you're feeling ok today? got my YD coming tonight hoping she'll do some head stroking 🙂


Funny s/e I have on day 9 of every cycle so far (3x fec) I get really bad stabby throbbing pains in my back, all the way from back of head to lower back, really severe for a couple of hours then after painkillers it just goes, very weird. Day 9 is the day after my last wbc injection (have 7 of these)so don't know if its a bone marrow thing? Not worried about it as its happened every cycle now but frightened the life out of me the first time it happened!...anybody else had this?

Not feeling as Grrr today, maybe helped by the fact I ordered some stuff from Next which arrived this morn in a nice little parcel ( very naughty as can't really afford it but don't care!!) Got a winter coat (don't laugh!) because last year the type I wanted sold out really quickly...also ordered some nice jeans (size bigger than normal to accomodate biscuit bulge!) & a top. Figured got just over 2 months left of this chemo crap & want something nice to wear when I eventually go out for a meal or something....retail therapy highly recommended!!

Sandra xx

[Gussie_WW]

Hi all.
Made it with Miranda to Patti Smith, and it was seated too. She was one hell of a presence, what a pair of lungs on her! Just her, some bloke with a guitar & Philip Glass on the piano, and the atmosphere was amazing. Glad I went, but sheesh I’m wiped today. It’s not everyone’s cup of tea, but if you’re interested here’s the review in the Independent. http://goo.gl/fsqnyX

Agree with you all about it being impossible to unpick what gave us BC. At the end of the day we’re all different, and we’re all exposed to god knows what over our lifetimes. So what if we sometimes carry some weight, ever had a fag, etc? All that plastic bottled water might have done it. Or a blast of some chemical we never even knew we were passing. Or life just sh4t on us and trashed our immune systems (Joan, that’s my theory for me as well).
Can’t keep up with everyone – sorry if I miss anyone out. You’re all in my thoughts.
Marion – your wig looks great!
Ann, great to hear one of us has some energy! Will think of you riding your horse. Made myself stagger out to the park this morning with the dog & was very glad I did. Sank onto a bench and threw the ball from there. But it was good to be outside, to watch him play, and to pass the time of day with other dog walkers (one thing about living on your own is you get stuck in your own head if you’re not careful. Or I do).
Jill, I’m ready to put the heating on too! Having to sleep in a buff to keep my head warm (that’s a buff on my head, not me in the buff…).
Fiona, Joan and others struggling with SEs from T, hope you start to feel better soon.
Cress and everyone missing what they thought they had planned for this summer at work – me too. L
Chelle, you go girl live updating from the bar, hope you’re hanging in there!

[jayney234]

Hiya Joan I know exactly how you feel. I am having a mammogram on 27th to see if the lump has shrunk significantly and I am terrified of them finding anything else. I seem to live in perpetual fear of what's next. My affected breast also feels sore especially where the lump is and I don't know if that is a sign of the chemo working or the opposte!! Like you I have got surgery and rads and anc probably to come and it seems to go on forever. I just want rid of it. Tax day 2 at moment has just given me a furry mouth and stomach cramps so am waiting for the next load of se's to kick in. At least on here there are others feeling and going through the same which does help - I don't know what I would do without looking on here although sometimes it does put the fear of God into me. Sh....y times that's for sure. Jayneyxxx

[YB54321]

Herceptin almost finished and touch wood so far no side effects from the infusion! About to start the Tax 😞

[YB54321]

Joan - yep it's really easy to get acetone free nail varnish remover at Boots or Superdrug. You can pretty much scratch it off without any remover anyway x Sorry you're having a tough time - this point seems to be getting many of the Jewels down. Keep fighting - its a crappy journey but hopefully now we've boarded the train we'll get off in a better place eventually!

[fimbo123]

Hi everyone,

Sorry to hear lots of us seem to have been having a rough time recently. I agree that halfway just makes us realise how hard the rest of the cycles could be. Given that I've still got my mx and probable ANC to follow (which I am really scared about) before rads, it feels like it will never end. I can't imagine how I'll do another 2, possibly 3, rounds of Tax.

I've been having a bad time on this first cycle of Docetaxel (day 8 now). It makes me realise how well I was on AC! SEs so far include:

• really sore mouth, feels like the inside of my cheeks are swollen, plus sore tongue and lump at back of throat. Makes eating difficult. Coating on tongue - checked with GP if it was oral thrush and he wasn't sure but gave me mouth drops anyway.
• sore red patches of skin on hands, in between fingers and on palms of hands
• sore nails / fingertips, although this has now eased a bit
• exhaustion, exhaustion, exhaustion!
• sore neck, like swollen glands
• muscle / joint ache is not too bad!
• anyone else find their temp runs slightly higher on T (ie 0.5 degrees or so higher than normal)?

So I've been feeling very sorry for myself. I can tell that my boys are now starting to worry about me, because I haven't been able to do much with them since Friday, and this breaks my heart. My husband has been brilliant with them and me, but it is tiring for him to be doing everything. I've been in bed / lying on the sofa a lot of the time. Plus I can't see or feel any evidence yet that the poison is doing anything to my lump - will I ever be rid of this? I wish I could have had surgery first. I keep thinking about the future and being so so scared.

Sorry about the moan - I know many of you are finding it just as hard. I'm so glad that we can all support each other.

Cress - I can understand how gutted you must feel not going back to work. I only work part time in a school office but I love it. I worked during AC but have decided based on this cycle of Tax that I won't be able to go back in September. But you will get your time to go back, at the moment you just need to be kind to your body.

Debs - hope the SEs are wearing off a bit for you now.

Marion - love the wig!!!!!

Fiona - sorry you're finding T tough as well. I agree about everything tasting rubbish. I hope today is turning out to be a better day for you.

Jayney - I'm glad it went ok yesterday, I know you were worried (it's that fear of the unknown, we all get it). I hope the SEs aren't too tough for you. We're all different so you may well be fine.

Maxie - glad really I didn't see the Daybreak piece. I try to avoid everything BC related in the media. I'm not overweight but I'm sure in my own mind I got BC when I was feeling quite low after my mum died and I was finding it quite tough when my children were a lot smaller. I got a lot of minor health problems then and I think my immune system didn't work quite right for a while. I'm hoping that because my life is a lot happier now (BC aside), that once this is dealt with my immune system will be stronger to prevent it coming back. I guess none of us will ever know why this has happened to us, and it's not fair whatever the reason.

Another quick question about Evonail (started it yesterday). Did someone on here say you could remove it with acetone free nail varnish rather than the expensive Evonail cleansing product they recommend? If so, is it easy to get acetone free nail varnish remover in the chemist? (not normally a nail varnish kind of girl) Brands?

Can't scroll back and I had a lot of posts to catch up on so I'm sorry for not responding to everyone. Just want to send you all lots of love xxx

[YB54321]

• Satsuma - Fi 15/8 (cycle 3)
• Marionblue - Marion 15/8 (cycle 5)
• Spurs79 - Claire 15/8 (cycle 4)
• TaylorJ - 15/8 (cycle 4)
• Jackiebee - Jackie 19/8 (cycle 3)
• ethel1 - Elizabeth 19/8 (cycle 4)
• Esther_1986 - Est 19/8 (cycle 4)
• Meggy-moo - Agnes 21/8 (cycle 4)
• MarthasSOS - Martha 21/8 (cycle 5)
• pat_1949 - Pat 22/8 (cycle 4)
• Deedee215 - Deedee 22/8 (cycle 4)
• Flip Flop - Faye 22/8 (cycle 4)
• March13 - Ann 22/8 (cycle 5)
• LaineyK - Lainey 23/8 (cycle 4)
• Linsey 50 - 23/8 (cycle 4)
• Trish1303 - Trish 23/8 (cycle 4)
• ambercatz - Jan - 23/8 (cycle 4)
• PeachyPal - Emma 27/8 (cycle 4)
• Cassie1 - Jayne 27/8 (cycle 5)
• Izzy1969 - Izzy 27/8 (cycle 5)
• Maxie - Sandra 27/8(cycle 4)
• pointy - Debs 27/8 (cycle 4) FINAL
• flippantfox - 27/8 (cycle 4)
• Artemis17 - Vicki 28/8 (cycle 4)
• Suffolklady - Cress 28/8 (cycle 4)
• cazzer1970 - Caroline 28/8 (cycle 4)
• Fimbo 123 - Joan 28/8 (cycle 5)
• titus4t - 28/8 (cycle 5)
• Glasgow Girl - Fiona 29/8 (cycle 5)
• Melrose15 - Emma 29/8 (cycle 4)
• NicJ - NicJ 30/8 (cycle 5)
• Gussie-WW - 30/8 (cycle 4)
• Janet C - Janet 30/8 (cycle 4)
• Katherine10 - Katherine 02/9 (cycle 4) FINAL
• jmeg - Jill 02/9 (cycle 4)
• LinsLleisio - Lins 03/9 (cycle 5)
• BeckyJoan - Becky 03/9 (cycle 5)
• jayney234 - 03/9 (cycle 5)
• ChelleB15 - Chelle 04/9 (cycle 5)

[Glasgow_Girl]

Cress - my sister is college lecturer and she just gone back to work yesterday. Although moaning slightly, after 6 weeks off, I can sense her anticipation with the new term, a real buzz going on, new students joining courses. So I can appreciate how you feel about missing that at your school. So many of us struggling at the moment, but it is reassuring and so helpful to know you're not alone and we have each other for support.
Will try the cucmber with fizzy water and ice, thanks for the tip. I had broccoli on Sunday, alas it tasted like everything else, cardboard/ sawdust (not that I've ever eaten either).

Gus - hope you (and Miranda) have had a fab evening seeing Patti Smith. Look forward to hearing all about it.

Marion - you look so glamorous, the wig is great and the colour suits you perfectly.
My posts are only long cause I'm a "notepad and pen" girl. so I jot down the news and gossip while I'm reading the posts. Ask my kids, they say I've got OCD with my notepads and lists. (My response to them is that I don't forget to do things, unlike them!!)

Ann - the drugs build-up sure explains why so many of us are struggling at the mo. Glad you are feeling well and able to ride. we certainly will all stick together and get there, as you say.

Jill - heating on? Whereabouts are you? We still in shorts with windows open in S. Wales, although not as hot as it was, still finding it muggy - don't worry, just checked my temp, 36.7! Glad you perking up and hope you enjoy a quieter week with plenty of rest.

You are all precious and I always feel better after reading all the posts. Had a rough day, almost had some tears just feeling sorry for myself. But made it through another day, watched Bridget Jones on DVD with my daughter this evening, one of our favourites. Hope for sleep fairies and to have a better day tomorrow.
Night-night Jewels,

Fiona
xx

[jmeg]

Evening Jewels feeling a bit more perky now,had to put heating on first time in months not just me though YS said it had gone a bit chilly so glad was begining to get worried lol temp had reached 37.4 but started antibiotics i was given as saftey net. Read an artical in paper yesterday that tescos have started security tagging the mucka honey lol hope you jewels havent devoloped sticky fingers,so winds me up about the various articles regards causes my sis is a ample girl i have took meds in the past for malnorished children so defo not weight issue,think i am about the only jewel that smokes (sorry) so that rules that one out,a lot of you are fitness godnesses so its not a lifestyle thing just seems to me that no one has the answer so will always jump on anything,personally I think its the luck of the draw and as shit as it is and I hate it will deal with it with a very strained smile at the moment and come out the otherside if not stronger then with a live life to the full attitude and dont stress the small stuff.
Well shops shut for a week so only got a training course friday hopfully decent buffet on offer even if I cant taste it lol Ive been nominated driver so couple of girls could be in for a good chemo ride lol think its cos we are all hitting the pub after and they know I am not drinking at mo ,GD going to stay at her dads for a few days so I ve got a really quite week good job really
Cold cucumer sounds refershing but gives me heartburn drinking lots of pinapple juice and eating opal fruits also remember the old fashion licqoirce twig things found some at the chemist other day so chewing them as well.
Anyway already begining to wilt again so going to get an early night
jill xx
PS those going on to heceptin my work BC friend has just had her last one of 18 before that she had FEC & TAX and managed it all without any line Ive had 2 EC and then needed line for 3rd so again luck of the draw

[Guest user]

Maxie - you will be fine, blame it on the dog or you could go for maximum effect..............Tesco with the OH, I was uncomfortable, couldn't help it. I am ill remember !

[YB54321]

Pat - thanks very much for signing the petition - I'm going to forward it to work as well as all staff at my bank get cover - but some of the staff get a really low wage and I think it wrong they'd have to pay for a wig. I'm fortunate that I earn a good wage but it should be 1 rule for all. We can't help that our hair comes out with the treatment and we shouldn't be out of pocket because of it.

Night all x

[Maxie]

Marion, lovely pic you'd truly never know that was a wig looks fab!...xx

Gus enjoy Patti Smith tonight!... 🙂

Faye not sure about thigh pain but had heavy legs feeling after last fec...is that what you mean? ..xx

Fiona, not sure about evonail but wonder if you googled it you may get instructions?....hope you get a good nights rest tonight & feel better in morning..xx


Ann, good to hear from you, was me joining you in the Windy Miller club!!...dont know about scaring horses but think may have scared a few local people today!!!...great that youre feeling good..xx


Cress, so bloody unfair all this isn't it!...cucumber & fizzy water sounds nice (remember vaguely BBC having a good slug of gin in a very similar drink!!!...oh if only!)


Chelle thinking of you tomorrow & hope you manage a decent nights kip, (least your bathrooms clean eh!)..p.s. OH thinks psycho scary boot really good description of me 😉


Night night Jewels, lets all hope we feel a bit brighter in the morning...xx