'June Jewels' - Precious and shining through :)

[Guest user]

Hi yes did try black nail polish, but it just kept peeling off, toe nails seem to be ok, which is very strange, toes still red, hot, and burning, onc says it could be nerve damage and not go away, legacy of chemo,just like we need reminding !!

have finally managed to get on to facebook thanks to Michelle,

good luck to everyone

Katherine xx

[Peabea99]

No- I have only just had a meeting about my operation which is booked now for 25 October . They'll see me 2 weeks after for results then I'll get rads booked in. It's made me feel happier now I've got op sorted but was feeling a bit deflated about chemo finishing as its been working so well! But obviously can't wait to be where you are through the other side . Glad to hear you're feeling better in yourself now 🙂

[Guest user]

Good luck today PeaBea.  I felt a little odd when I had my last session last week.  Now , a week on I am relieved I am not facing anymore and as each day passes and  I begin to feel better in myself it is even better.

Have you had your rads meeting yet.

[Peabea99]

I have last chemo tomorrow - did anyone else have mixed emotions? If anyone is tnbc - I found a very supportive group (if you haven't found already and will send details.)

[Guest user]

The last steriod went at lunchtime, thank heavens for that. Still tired out and not been up much today though.

Tomorrow will be better I hope.  So hoping the rads don't wipe me out like the chemo has, this sixth one is a killer.

Stay strong ladies, nearly there for us all.  xx

[Melrose15]

Katherine my nails are very brittle and breaking at odd angles. I've had one tax and not had tingling or numbness. Thank god. It's such a hard regime it wiped me out for a good 9/10 days.
Peabea message ChelleB if you want to join us on fb. Xx

[Maxie]

Hi Katherine,

Sorry to hear you've been having such a hard time on Tax, have you put dark nail polish on your fingernails? This is apparantly supposed to help as it reduces sunlight getting to them (not that theres much of that at the mo!)
Think Chelle has sent you details of joining the facebook group today, you'd really enjoy all the banter & advice on there, hope you can give it some thought, most of us are on there now & its completely private.

Love Sandra xx

[Guest user]

Hi Marionblue,

I do hope your onc to right about fingers and toes, unfortunatley i have this se since first cycle so you knows have to wait and see i suppose, also have you had ant trouble with fingers anils, mine are very sore and look like i have shut them in a door. 

anyway, i hope everyone is doing ok and not too many se good luk to anyone going to dragons den tomorrow

Katherine xx

[Marionblue]

Hi Katherine  -  I have numbness in the ends of my fingers and two of my toes. ONC said as it didn't start until after cycle 5 it is is hopefully temporary but Taxotere can cause permanent nerve damage.  Lets hope this doesn't happen.

Marion

XXX

[Guest user]

I am still here, glowing in the dark and cannot sleep, blooming steriods.  I am very tempted not to take any more.  I had the final chemo yesterday.

Windy Miller Ann xx

[Guest user]

Hi Katherine

I think most of us are struggling with this new style forum, are you able to join the Facebook site that Chelle set up? It is completley secret and cannot be seen by anyone other than us Jewels.

I suffered all those symptoms on tax and so have most of the other jewels (I escaped the burning feet etc but other Jewels have had that). My taste buds generally returned about day 10.

They may reduce your dose slightly if you are really suffering bad SE’s.

I hope you feel better soon. Take care and hope you can join us on the FB site. Just PM Chelle and she will add you.

Debs xxx

[Guest user]

hi , what has happened to everyone? seems to be days where no one has posted, this cannot be right, miss everyone, i am still going through se of last chemo burning fingers and toes, also feels someone has removed the bones in my legs, also get short of breath when doing the slighest thing, don't know if this is alright or not, will see ong. next week, hope to find out then.

also does anyone know when taste buds are likely to return, still cannot taste anything, 

look after yourselves everyone, 

love Katherine x

[Melrose15]

Morning Jewels. Enjoying a lazy morning eating toast and drinking tea. Not much energy but not beating myself about it just taking each day as it comes .
Hope you're all doing fine. Xx

[Peabea99]

Hi jayney
Sorry that tax has been so awful with sickness . I found FEC awful and took emend - whilst I stopped being sick and no more calls to out of hours doc, it didn't take away the ill feeling or the feeling of nausea. I also have to have my op soon. I'm waiting for an appointment with the surgeon to discuss and told that it'll be 3-4 weeks after last tax (20/9). I'm really nervous too. Feeling nervous that chemo ending though, which is probably weird!!! Can't celebrate as I feel the journey has a way to go still. Good luck xx

[fimbo123]

Jayney - thanks for thinking of me. Good to hear from you as I was wondering how you'd been. So sorry to hear you've been having a really rough time. The sickness sounds terrible. I'm surprised too they haven't reduced your dose. My second Tax has been a 20% reduction, and there is no comparison with the first one. I've had the horrible taste buds and the tiredness but only a small amount of red skin on my hands and none on my feet and no infection this time. I am also terrified at the thought of the surgery and of the path report afterwards. I don't know yet whether I have one or two more Tax to go - depends on results of MRI last week which I'll hear on Thursday - scared of that too as I don't think chemo has shrunk lump by much, if at all. Trying hard to remain calm and positive in the face of it all but it's tough!

I hope you can come and join the fb group - it would be good to see you there and it's completely private. Sending you lots of love xx

[TaylorJ]

Jayney good to hear from you but am so sorry that you are having such a rubbish time. For me surgery was far easier than Chemo but i had surgery first so not same situation as you are in now. We are all still here for you though a lot of us use Facebook now. It would be great if you joined us, just send a PM to Chelle (she has posted below). Hope to hear from you soon on FB, until then take care Jayney and I hope you start to feel better soon. Big hug. Xxxx

[jayney234]

Hiya all  I have been confined to bed for the last week as my 2nd Tax has really floored me again.  I complained about Fec but this is far worse.  The nausea is relentless - despite getting numerours tabs from Onc - and I just feel crap.  No energy and headaches.  Can't eat or drink anything and the mere smell of toast gets me retching.  Thoroughly fed up with the whole bloody business.  One more to go but I don't know if I can face feeling so ill again.  I was hoping my dose would have been reduced but it wasn't.  Last time of seeing Onc for  while in 2 weeks when she will start me on hormones and then I have to see surgeon.  Getting really nervous now as although chemo is **bleep** I don't really know whats coming until they operate.  Very scarey.  Hope everyone else is getting through it all with minimal se's. I don't come on here much as I can't find my way around.  Very sad as this has been a lifeline for me.  Is there a June Jewels FB page?  If so how can  I join?  I suspect that may be the way to go.

Joan - Hope you are ok as haven't seen anything from you for a while and I know you were having a hard time.

Jayneyxx

[YB54321]

This is Chelle by the way. Hope everyone is doing ok - not feeling great myself but have rads planning appt in morning. Catch you all soon x

[Lucy_BCC]

Hi Ann
I am not sure why you have a number instead of a name, if you email moderaotr@breastcancercare.org.uk with your choice of username we can change it for you, I will pass this on to the technical team, please accept our apologies

Kind regards
Lucy BCC

[Guest user]

how do we get our name instead of a number on our profile ?

Ann xx

[Guest user]

Hi Ladies

Slightly confused and not sure who is who with the numbers and no names!  Sorry

Hope all of you not on FB are doing ok and not suffering to much from SE's

Debs x

[Guest user]

Half the names on here are now numbers! What is going on? Anyone else  have that? Sorry havent posted on here for a while, have been in hospital with neutropenic sepsis, but am now released and feeling ok again. hope everyone I don't see on facebook is still ok xxx

[Guest user]

Morning Jewels,

Good luck to those at the bar today.  I have my final ONC appointment this afternoon.  That feels strange, my mind is starting to run away with me again - hence the ridiculous time of day I am typing away at !

Why am I worrying about the treatment ending ! is it normal to be worrying about something coming back quickly.

For heavens sake, I am losing the plot !

[TaylorJ]

Clare will be thinking of you during next week, we are all here for you, take care. Xxx

[YB54321]

Don't know what happened to my account but had to reset it as not been able to get on here last couple of days!

Any ladies still wanting to come to York just PM me and I'll fill you in on the details or send me your email address and I'll send you a link to the private FB group. You don't need to friend anyone on there if you're worried about BC chat showing on your profile. All totally private x

Feeling rough today - Neulasta is giving me monster bone pain so a day on the sofa planned.

Clare - much love with you next week (as always) you know where we are if you need us xx

[Gussie_WW]

Morning all. Starting to feel like myself again after two weeks of oral antibiotics and 1 week out from first tax. Ooph. Still getting crazy dreams, night sweats (tho the chillow pillow really helps) and yes, the sweaty bald head! Urgh!

Not sure how much I'll be online over the next week or so as its the 1 year anniversary of my partner's death.

Hope everyone is doing ok!

Clare aka Gus

[Melrose15]

Morning Jewels.
Where are you all? Still haven't heard from lots of you for a while.
It seems the last cycle or 2 have been really tough for so many if us, both emotionally and physically. Having the support here is fantastic so please pop in and let us know how you're doing. Xxx

[Guest user]

Windy Miller is not for moving, she has had vegetables in black bean sauce, prawn crackers and Chinese chips.  Now gurgling and farting gently, but it will get a whole lot worse, that I can promise.

[Melrose15]

Chip shop chips taste good!!! Oh dear. Having not eaten properly all week I'm going to be suffering later!! Move over Windy Miller 😉

[Peabea99]

Yes- can def recommend LGFB! Those night sweats, crazy dreams ... I get too and bald head sweats! Never anticipated that!

Before you all hotfoot over to Facebook - I'm from Kent so if anyone in this neck of woods pm me if would like a scream or groan or just eat cake !

Adios 🙂

[YB54321]

Ladies - as long as you only post items under the Jewels group nobody can see it and cannot even search for the group unless invited. I think a lot of the ladies don't want things posting on their timelines so all BC related posts should be under the Jewels only x

[Marionblue]

Fi - My last 3 blood from GP taken 2 days before chemo have been low, but when they have tested again before poison they have been back up and fine, so they have gone ahead with treatment.  Don't know how that has happened but have been relieved that doses all went ahead on time.

Clare  -  I think its the Tax giving you strange dreams.  I have had 6 cycles of Tax and each time I have had some horrible dreams for the first week.

I have never used FB as I can't imagine that anyone would be interested in my daily doings.  I have also had privacy concerns.  I will give it a go though just to see if I can get on. Chelle has sent me a link so hopefully it will be o.k..

Good luck at the bar today ladies, hope to hear from you later.

My face has gone into baboon bottom mode as usual but I'm taking antihistamines which usually makes it go away in 3 days.  Not looking forward to nasty taste in mouth, bad dreams or aching bones but hopefully I'll start getting my body back soon.  So glad I won't have to go through this again (hopefully). Just want to smile 

Sunny day at the moment but heavy rain forecast for this afternoon, which is a pain.  Need to do some shopping but can't go until I've had my last steroids lunch time.  Hate the thought of wearing shoes again instead of sandles.

Hoped summer would keep going for a bit longer.

Have a good day everyone.

Marion

XXX

[Glasgow_Girl]

Chelle - thanks for the latest list, so good to see 3 graduated already.

Paula - everyone raves about the LGFB session. Got mine in Oct, AFTER I graduate from Chemo College, really looking forward to it.
Keep well and good luck to you too. x

Emma - so sorry you still suffering. When I needed to see GP while back, the onc nurse phoned and made the appointment and I got seen the same day. Try flashing the yellow card? (17th ridiculous time to wait). xx

Joan - not in hospital again, lovely, no wonder you're fed up. Chin up, big hugs xx

Marion - yaaaaaaaaaay!! Hopefully no SEs this final cycle. So glad your remaining hospital trips will be easier and nearer to home. Congrats on graduating Chemo College.
Lots of love, Fiona
xx
(Like Anne (TaylorJ) and Ann (March13), I'm a novice on Facebook, please join us.)

Ann - our FB group completely private and nothing on there will show on the "public" pages. I don't want anything about BC appearing on my public page at all, so hope all my FB friends will just post nice, frivolous, happy stuff on there. I've chosen who I share my BC with, so wouldn't want any acquaintances to find out about it via FB.

Fi - hope the bloods don't let you down. Fingers crossed you'll be ok and avoid Hotel NHS x

Have good day everyone,

Fiona
xx

[Gussie_WW]

Morning all. Had a night of weird dreams and night sweats , urgh! Thinking this is maybe tax, maybe antibiotics,, maybe antifungals ... so hard to untangle whats an SE of which medication!

So very glad it's cooler today.

The fb group is completely private - just make sure you post anything within the secret JJ area. We all see it but no-one else can.

[Melrose15]

Morning Jewels.
Is anyone at the bar today? If so its a cooler day so chill out and relax xx
I'm still suffering monster period 😒Have only been out of the house twice this week. Meant to be going to a friends for lunch so I am going to try and muster some energy. She had mx, chemo etc last year so we'll compare notes I'm sure.
Have a good day Jewels. I know its been a tough ride for so many of us it makes the support on here all the more important xxx

[Guest user]

Is anyone awake yet, it's nearly 8am, we should all be jogging around the block in our mission to get fit again.  In my case read that as an amble to the bathroom.

I followed instructions and have managed to join the face book group, but  I am useless on computors.  If I post on our secret pages will it show up on my normal facebook page ?  I hardly ever use it and it was only set up for me to see what was going on when my husband went to his daughters wedding in Bali during my first chemo session.

Good luck to those at the bar today.

[Satsuma]

Oops hit post prematurely!

Marion I enjoyed your post after your final chemo! Great that you're having most of your Herceptin nearer by; that will make a difference I'm sure.
Hope Anne and Claire also got on ok at the bar today.
I'm feeling ok after my 4th today, but concerned that my low bloods- borderline today- may mean further delays to my final two cycles if I don't get the injections which I've not had so far. There also sounds like quite a few hospital trips recently by jewels due to neutropenia so would prefer to do all I can to avoid.
Poor steroid sleep ahead tonight I think..feeling extra scatty too. 😳
Fi x

[YB54321]

Marion,

So glad you've graduated chemo xx

[Guest user]

Awful ones before I had the coil fitted. they were really awful.

[TaylorJ]

Hey Marion, great to hear from you on your graduation day! Hope your side effects are manageable on your final cycle and that you have a good night's sleep tonight. Would be great to see you on Facebook,  I joined recently and have been enjoying the chats with the Jewels. Never used Facebook before but have got the hang of it and the added bonus is the it is a secret group. Have a think and let Chelle know if you fancy it. Xxx

[Marionblue]

TAX/Carbo  6 Cycles       Herceptin   18 Cycles       Cycle 6      Day 1

Evening lovely jewels

Thanks for all the inspiring messages.

I'VE DONE IT.  So relieved to have the nasty part of chemo behind me..Hope no new SE's waiting in the wings.  Still 7 Nimvestin injections to go then 12 Herceptin.  I'm having my next Herceptin on 26th September at Ysbyty Glan Clwyd in Bodelwydden where I've been having my chemo. I will have the rest of the Herceptin at Llandudno Hospital which is a lot easier to get to especially in winter.

Catch up later if steroids keep me awake like last night.

Love to everyone

Marion

XXX

[fimbo123]

Temperature on the up again (37.7) so waiting to be seen in a&e. Soooo fed up as I had really hoped to get away without an infection this time as my ses have been less on the reduced dose 😞

[Melrose15]

Hey Marion are you out partying already?!
Hope everyone's trip was uneventful.
So many Jewels MIA . I hope this forum isn't proving difficult for some to get the hang of.
Still not feeling 100%. BcN said to make an ap with gp re period and they can't fit me in till 17th! So will try tomorrow. I'm getting worried something more is going on now.
Any ladies who have been or were going through he menopause, did you have long heavy periods?
Xx

[YB54321]

Marion - hope you are back home soon and enjoying your graduation x

[YB54321]

Ann - personal message me your email address and I'll send you and invite to the FB group x

[Guest user]

Hello ladies,

Hope we are all doing reasonably well.  Sip carefully today, no guzzling it is not lady like.

Where do I look for the face book thingy ? 

[Peabea99]

thanks fiona Faye and Emma for replying to me! I hope you are all OK. These s/e's are awful aren't they and the jabs cause bone pain for me too. I am currently trying to read Jane Plant's book - don't know if there's already been discussion about her on here but it's heavy reading!! I also went to Looking Good Feeling Better a couple of weeks ago and really enjoyed it and meeting other people in our position face to face!

Kids back at school today so I am looking forward to rest this afternoon so I have the energy to pick them up! Hope those suffering are feeling better today and thanks again for replying and Good luck to everyone with your treament 

Paula

[YB54321]

Jackiebee - Jackie 09/9 (cycle 4)
ethel1 - Elizabeth 09/9 (cycle 5)
Esther_1986 - Est 09/9 (cycle 5)
MarthasSOS - Martha 11/9 (cycle 6) FINAL
Meggy-moo - Agnes 11/9 (cycle 5)
pat_1949 - Pat 12/9 (cycle 5)
Deedee215 - Deedee 12/9 (cycle 5)
Flip Flop - Faye 12/9 (cycle 5)
March13 - Ann 12/9 (cycle 6) FINAL
Murphy1 - Sara 12/9 (cycle5)
LaineyK - Lainey 13/9 (cycle 5)
Linsey 50 - 13/9 (cycle 5)
ambercatz - Jan - 13/9 (cycle 5)
jmeg - Jill 16/9 (cycle 5) (Start of 12 x weekly TAX)
PeachyPal - Emma 16/9 (cycle 5)
Cassie1 - Jayne 17/9 (cycle 6) FINAL
Maxie - Sandra 17/9 (cycle 5)
flippantfox - 17/9 (cycle 5)
Artemis17 - Vicki 18/9 (cycle 5)
Suffolklady - Cress 18/9 (cycle 5)
Izzy1969 - Mandy 18/9 (cycle 6) FINAL
cazzer1970 - Caroline 18/9 (cycle 5)
titus4t - 18/9 (cycle 6) FINAL
Fimbo 123 - Joan 18/9 (cycle 6)
Glasgow Girl - Fiona 19/9 (cycle 6) FINAL
Melrose15 - Emma 19/9 (cycle 5)
NicJ - NicJ 20/9 (cycle 6) FINAL
Gussie-WW - Clare 20/9 (cycle 5)
Janet C - Janet 20/9 (cycle 5)
LinsLleisio - Lins 24/9 (cycle 6) FINAL
BeckyJoan - Becky 24/9 (cycle 6) FINAL
jayney234 - 24/9 (cycle 6) FINAL
ChelleB15 - Chelle 25/9 (cycle 6) FINAL
Satsuma - Fi 26/9 (cycle 5)
Spurs79 - Claire 26/9 (cycle 6) FINAL
TaylorJ - Anne 26/9 (cycle 6) FINAL

GRADUATED CHEMO COLLEGE
pointy - Debs
Katherine10 - Katherine
Marionblue - Marion

[Glasgow_Girl]

Marion - loved the quote, thanks, saved it with all my lovely bits and pieces.
So pleased you about to graduate, no cliches from me ( we're all sick of them). You've done it and been great inspiration and friend to all of us Jewels. xxxx
Please join the FB group (I caved in and joined yesterday, it's great). It will mean we can keep in touch after everyone has graduated.

Emma - thanks for the Lush info and Boots link (website down T the mo, I'll try again later).
Ditto re the disgusting mouth, me too. Also so sore, I'm on baby toothpaste and very soft brush, as well as Difflam.

Have good day everyone. Enjoying the warmth before the cold and rain arrives tomorrow!
xx