'June Jewels' - Precious and shining through :)

[Melrose15]

Bonjour!
See can't keep away from you all! I'm having a relaxing time and definitely making the most of being on top of it. I'm so apprehensive about starting Tax!
Joan, Nic and Fiona the feet thing sounds horrible. I'm hoping for your sakes its a temporary s/e and will pass.
Deedee and Cress how are you doing? I'm still concerned we've had no word from Becky or Lins. Has anyone heard from them?
I texted Martha but no reply. Don't like to stalk people so I'm hoping she'll text back when she's ready.
Red wine, my usual tipple, tastes wired and gives me acid reflux so been drinking cold beers. Well I am on holiday 🙂
Tale care Jewels. Xx

[Glasgow_Girl]

Afternoon everyone,

Chelle - glad you having a good spell. What cakes did you bake?
I'm not on Facebook, alas, never had time before BC. So, hope I don't miss out next week. Can we still PM, even though threads are down, do you know?
My wig is a Raquel Welch, but it was the only decent one in the shop that did not look like a bird's nest on my head.

Deedee - lovely to have you back and glad you been away and had a good time.

Debs - lovely to hear from you too and great you've been having sich a good spell. You look gorgeous in your new wig.

Vicki - don't think much to be done re my feet at the mo, damage already done really with the Docetaxol. Will phone onc nurse again tomorrow I think. I'm just Her Ladyship sitting with feet up most of the time, very frustrating. OH hoovered yesterday and cleaned the bathrooms today, so at least the place is reasonably clean.

Nicj - good to hear from you again from Greece, still lots of adventures, what a pity about the jeep. Welcome to the "feet packing up" club.
I like the "I get knocked down but I get up again ain't never gonna keep me down", sums it up for all of us I think.

Joan - thanks, Sandra told me about your thread, will hope we get some good tips for our poor feet. Hope you stop at just the heels, that's bad enough. Mine are both red all over the soles, including toes, hot and tight. Also got giant water blisters on each outside heel, same place on each heel, bizarre. Can barely walk, a quick hobble then lots of sitting down with feet elevated. My hands are quite sore too, although nowhere near as bad as the feet.
Hope you are getting home today. Will PM you with some more info.

Emma (peachy) - so sorry you are reeling with such radical news about surgery. As you say, it's not certain yet, so keep going lovely, we're all here to support you.

OK, I'm off to hobble to the kitchen for a drink, I may be some time!

Fiona
xx

[YB54321]

Ladies - I've set the FB group up as secret so nobody can even search or find the group unless invited to join it and none of your friends or family can see any of the posts - just remember to post under the June Jewels group rather than on individual timelines and then it's all completely private x

if anyone else wants to join just send me you user name and then we can add you as friends and to the group x

[NicJ]

Joining the useless feet brigade - swelling up massively, now lying with feet way above the rest of me in hope will a
l slide away, pink soles too! elevated liver things I think.
emma hard news for you, thinking of you and all of us who are going to have hard choices ahead.
nicj
xxx

[deedee215]

Aww Emma (peachypal) has made a group on fb so its a lot of us that in the june jewels that are on it so it means no other family or friends can go on it.
Deedee (Doreen) xx

[PeachyPal]

Evening Jewels,

Firstly – what information do I need to give you Chelle for Facebook? I’m then PM you. Just want to be sure this will be private to us Jewels only as I have many friends on FB who know nothing of my BC.

Secondly – I hope all that were at the pleasure of the NHS hotel are OK. Hugs to you all x

Chelle - I have signed the petition, I think it’s so wrong. I mentioned it to my doctor yesterday; she was in support as she has suffered from alopecia for years and gets very little support. She gave me some advice to wash the wigs a few times before wearing them to soften them - will be kinder to the head.

Nic & Emma (Melrose) – hope you are both enjoying your holiday – I am so envious, I would love to have the courage to go away.

All the jewels suffering with SEs, I hope they are reducing or becoming more manageable. Big hugs x

Last couple of days have been a bit of a whirl wind. Saw onc yesterday who reassured me in regards to Docetexel, I was so worried after reading posts and went armed with loads of questions. She said that only 1 in 100 has a reaction and that the main 4 SEs are bone / muscle ache like flu, mouth ulcers, nail weakness and diarrhoea – let’s see!!!!

She also gave it to me straight about where I am and what I need to prepare myself for. She is fast tracking my bloods through genetics – should be 3-4 months but she wants them back quicker than that as although the plan is for me to have rads, if the results come back brca 1 or 2 then I will have to rethink my next steps. Double MX and hysterectomy – this hit me like a tonne of bricks yesterday and spent a few hours in the arms of OH, many tears and ended up having a few too many ciders and a few ciggies (gave up on diagnosis). Been on the sofa all day today feeling crap, not because of bc but hung-over!!! But today is a new day and I need to give myself a kick up the rear end, nothing is certain yet and I will conquer this one way or another. On a positive side, they have given me sleeping tablets for the first few days of the next 3 cycles – hope it stops the night terrors this time, not sure I can cope with them again. Also some mouth wash in preparation for the mouth ulcers and for a few days last week I had gum bleeds when cleaning my teeth.

Well I’ve not long woken from an hours nap on the sofa, so gonna make myself a hot chocolate before bed time. Night night Jewels – hope you all sleep tight xxxxx

[Guest user]

Cress, YES! That is exactly where we are staying. Will pm you
D x

[Guest user]

Cress, YES! That is exactly where we are staying. Will pm you
D x

[fimbo123]

Fiona, I've joined you with the Tax feet! Only red round my heels so far but still really painful to walk on. Even lying in be hurts the backs of the heels. How will we manage this one?! Anyway, just wanted to let you know I've asked for tips for dealing with this on a new thread. Don't know how to copy and paste the link on my phone, but if you go to undergoing treatment - chemo section you should find it. Only one reply so far, but lets hope there's some good advice out there.

I've been reading all your other posts but all these IV antibiotics are making me feel really sick so can't really respond now. Still hoping to be released tomorrow, although today I was allowed off the ward to go for a coffee and a walk in the garden - exciting life I lead! In all seriousness, though, it cheered me up no end - feeling quite a bit more positive again today 🙂

Sweet dreams Jewels xx

[Guest user]

Chelle great idea have Pmd you my details - glad we can all be in touch next week too.
Nicj love your motivational phrases 🙂

[pat_1949]

Chelle have p.m'd you. Thank you. Xxx

[deedee215]

Cress have pm'd you, and chelle and Sandra too xx

[Suffolklady]

OMG - are you staying at The Great House???

[Suffolklady]

Debs, seriously? Lavenham?? It's like - on my doorstep!! I'm sure you've got everything planned but if you fancied a meet... just PM me! No offence if you don't - I understand time away is SO precious! xxxx

[Maxie]

Hi lovelies,

Deedee good to hear from you, aww little girl very cute...glad you had nice weekend away! Know what you mean about visitors, great to see peeps but exhausting..xx

Vicki Porn star name...theres a couple of versions but the one I know is first pets name followed by your mum maiden name....love mine ...'Clover Hogan', might get it changed by deed poll!!
As for the 'past your best' comment I'm not having that!! The best is yet to come for all us Jewels 🙂

Chelle have PM'd you my f/book details, can't possibly go a whole week with no contact!!!

Deb looking great in your wig!....I had that angry cleaning thing last week too!!...quite bizarre. Enjoy your trip away, hope you've got a Satnav just in case lol!!..

Cress yes 'roll on York'...!!

Nic J sounds like a lovely place where you are, hope not too many dramas for you for rest of hols....jacuzzi that does sound nice!..


In my onesie (since before 7pm!!) about to watch a film & having a cheeky glass of red (even tho Im on penicillin...naughty!)
Enjoy your Sat night sparklies....xxx

[NicJ]

I'm in Ludlow, well not right at the minute.
Definately in Shropshire also known as the graveyard of ambition.
Have been sitting in jacuzzi and even today been and sat on a beach, sadly jeep broke down on way back so had to pull into a Taverna for lunch and a couple of cokes on the rocks while waiting for replacement. Mild panic as Tim got upset over broken car and wanted it fixed right then, but we have handy greek phrases. I have cancer and My son is autistic written down for just such moments. The taverna owner and the mechanic read this and with a couple of bored Nei Nei s and shoulder shrugs they just carried on getting us our greek salad that we didn't order! Have had to wave the phrases quite alot as Tim been a bit over excited at times and caused an entire beach full of Greeks and Italians to fall into stunned silence as we the only pale and pink visitors run after him or just look on fondly as he flaps and jumps up and down and screeches at the top of his very loud voice.
Paid for this adventure by 4 hours sleep followed by a good 2 hours to come round.
Hope everyone out of hotel NHS, that all wigs are coming up to requirements or refunds met, that all OH s and teenage off spring will be visited by the sensitivity fairy, and that all bad taste buds go away. Love the night out at Simpsons must go there maybe for my OH 50th just after finish chemo and before mx. Have been to Turners not far away that was pretty special too.
Love the idea of a Facebook page easier to post pikkies too.
Here's hoping for a SE free, relaxing, stress and anxiety free weekend. However in our case I am just waiting for the next event!
Phrases to hold it together to.
Weebles wobble but they don't fall down,
chumbawumba - I get knocked down but I get up again ain't never gonna keep me down.
Or a resigned - If it weren't for bad luck we'd have no luck at all.
Now going to struggle to a taverna to watch my lovely boys eat - sore mouth forming!
With love to all
NicJ
Xxx

[deedee215]

Debs looking good doesn't look like a wig at all, thats good you have only one cycle to go thank goodness I bet you say eh
Vickie thanks for letting me know what ANC is lol, I knew it would be something that I would be getting done too. I go in on November for my MX and ANC yes onc had said I was to get all of my lymph nodes removed.
Chelle love your profile pic too your wig looks really good too, is it a wig? did you not go for cc?. Thats my wee baby I looked after for 17mths before this BC she is cute isn't she, people were always telling me to put her into baby competions especially as she loved getting her photos taken wee poser lol.
Deedee xx

[Guest user]

Cress. You are of course correct! Ludlow is in Shropshire and very lovely it is. However I am going to Suffolk to Lavenham. So on account of being flash and thinking I can rule the world with no SE's at present, I got all my L's and S's befuddled !!!! Clearly i still have chemo mush brain! Heaven knows where we will end up next week if I can't get them sorted! Lol
Thanks for that or I could have been in a right pickle! Doh

xxx

[artemis17]

Double jinx too 🙂

[YB54321]

Jinx

[YB54321]

If anyone wants to keep in touch on Facebook or so we can set up a private group to chat for time away from this site - pm me your Facebook details and I'll set one up. I've not used it for a couple of years but am back on it now x

[Suffolklady]

Ha Ha, we all posted at the same time!

[Suffolklady]

Debs - I'm confused! Isn't Ludlow in Shropshire? I'm only asking as being in Suffolk - I thought you might be coming to visit near me!! x By the way, I love the pic - the wig looks great, really suits you! X
Deedee, ANC is short for axillary node clearance - this BC is like a whole new language isn't it! One we never wanted to learn but now speak pretty much fluently.
Don't know about the rest of you Jewels, but ROLL ON YORK!!!
xxx

[YB54321]

Deedee - love your profile pic - who is it? So cute x glad you had a nice break away x I'm not sure if everyone on tax has white blood cell boosters but I think it's pretty common.

Debs - love your wiggy it really suits you. I've got a short Noriko wig and I also watched a lot of the videos from the USA. I think the woman is called Cynthia who I've seen do loads of reviews but i agree they give you a much better idea of the colours and styles than the pics on the sites. I'd seen a Raquel Welch wig online that was £300ish that looked lovely on the pic but instore was nothing like it and looked awful. Hope you have a great time away next week x

Have a good night all - off to make tea for the folks x

[artemis17]

hellooooo 🙂

Well, firstly, "Gus", porn star name?? how does that work, i must have led a shelterd life as never herad of that before, so whats the deciding criteria??. Will work it out when i know lol...

Definately think theres something to do with cycle 3 as so many of us have either found it tough or ended up viviting hospital, lets hope things steady for a bit.

Waaaah i didnt realise we wouldnt be able to post on here after Mondday, i thought it was just the avatar thing that wasnt moving to the new site. How on earth will we manage??. We will be able to PM on here or is that not available either?. Its probably too late to set up a facebook group(even if i knew how to that), but if anyones on FB purely for keeping in touch then im happy to be part of that??.

Cress sorry youve been "inside", are you still on track for your next chemo ok?. Judging from all the Tax side effects that us FEC girls are/will be having, youve done really well to manage so far. I agree re the melt down over mess, i do feel a bit weary of the crumbs/wet towels/balled up socks/empty loo roll etc at times and ive only got the one son at home.

Debs the wig is stunning, youve certainly bounced through this cycle and look fab, great youve only got one to go, and yes, ill be having rads probably starting after you finish (late October) i think, but any info will be gratefully received. Are you going back to work soon??.

Fiona, ouch re the feet, is there nothing that can be done other than rest, like you say theres not much that doesnt involve using them even if its just to get a book etc. Hope the family are rallying round and not sat talking sport all the time ;-). Ive only tried audio books twice and both times i fell asleep, i think if i sit still for too long without distraction ie a "real" book or whatever my body switches off. Love the idea of it though as i do enjoy the radio for chat/company at night.

Haha Jill, your family sagas do make great reading, maybe you should install a web cam and have your own sitcom. Glad you got out and about though, you must have been pretty exhausted after a full day, mind you nothing better than a group of woman getting together to chat & cackle, cant wait til its us in York!!.

Jackie, sounds like a lovely feast, even though small portions dont seem much, its suprising how you can get full up especially if you have to wait between course, whereas at home we shovel it down a lot quicker so probably eat more than we need.

Sandra, loving the pic, though i didnt notice it was a monkey at first & thats with my contacts in, its good we all humour to help us through this, i think it makes it easier for our nearest & dearest to be able to have these lighter moments too. Its great you have a BC buddy too as you dont have to expalin how youre feeling over certain things, hope the curry goes well. I like the fact that ive got a whole new bunch of friends that ok, maybe i cant spend time with in the flesh, but that i feel close to, having shared so much with, and i know we WILL get together one day.

Chelle, you look good too, really approachable, open and smiley. Glad you are getting a bit more sleep. As for me being wonde woman, i certailny dont feel it, i think its down to a) not being paid if i dont work and b) not having anyone else around to help me (ie family) so i push myself for my sons sake??. Boyfriend is good, but hes 40 miles away so im a bit too independant at times. I have changed my pic in honour of what youve said, although its how i view myself more so a rather ragged, overblown, past her best wonder woman lol....

Deedee, glad youre doing ok, anad have some BC free time. ANC is axillary node clearance (although the times its taken me to post this someone may have already told you) so everything taken from the arm-pit. i had it done though they only found 12 nodes, 5 were bad 'uns which is why apparently i still need rads even after a Mx and chemo. Hope you have a restful w/e after all your visitors.

Ok well to each and every one of us we are stars ( whether porn or not lol) and im proud to be part of such a fab group of ladies!!. Hope to post again before the site "freezes" and look forward to working out my new name lol!!.

take care gorgeous girls 🙂
xxxxxxx

[Guest user]

Hello Lovely Jewels
Tax/Cyclophosphamide x 4 Cycle 3 day 12
I haven't posted properly for a while, purely because the last cycle knocked me for six, then I got a bit emotional for a few days and then I started to feel better and got REALLY motivated and busy. I have been reading all your posts and am so sorry tht some of you have and are staying at the the pleasure of the NHS hotel and that others are having a tough time emotionally and with SE's. Huge big hugs (gentle where needed) have been virtually winging their way each day.
I got mad and went into 'I will beat this mode' after the last lot of chemo, my conservatory and everything in it is now cleaner than the day it was built, scrubbed and hoovered to within an inch of its life! All freezers and fridges cleared out and cleaned thoroughly.New garage door and shelving ordered and van hired for Monday ready to be cleared out completley and one wig sold on ebay and new one purchased (new pic), decided to go back to how I used to be BBC!!!! Spent 6 hours walking round Marwell Zoo with my sister and niece and nephew yesterday, shattered last night .Phew!
Am taking OH away to a lovely hotel in Ludlow Suffolk for a night next week as I think he deserves a treat for being very patient and taking all the cr*p I have been throwing at him. Really looking forward to that and the hotel has a fab french restaurant for dinner as well.
Last lot of chemo on the 27th of August, last time around I took paracetomol and ibuprofen (ok'd by ONC) every four hours from day 2 until day 7. It kept the headaches and the bone pain/aches at bay and although I was loads more tired this time, I felt better and recovered quicker than other times so will continue that for the last one. My dates for rads are through. I start on the 16th September and finish on the 16th October so there is now some light at the end of my tunnel. I know loads of you still have a much longer road to go down and I will certainly still be here supporting where I can and feeding back on the rads if it is of any help to anyone.
I noticed someone (sorry cant remember who ) commented on wigs and different companies. I have just bought my latest one (which does need trimming a bit as a lot of it!) from http://www.naturalwigs.co.uk who are based in Edinburgh. I bought a Noriko Rene of Paris wig and got it for 75 quid as you can opt to be VAT exempt. It came within 3 days and they do accept returns as long as you dont brush, style it etc. I did a load of research into the style and colour on you tube. If you put all that detail into the search there are loads of 'real people' (generally american as they are big on wigs) actually showing and reviewing the specific wig you are looking at. I found this gave me more confidence as you can actually see what it really looks like before you buy it.
Not sure what any of us are going to do on Monday and all of next week, you won't be able to shut us up once we get back on!!
Stay well everyone and for those of you suffering or incarcerated, hope eveything sorts itself out soon. Good luck to all of you at the bar next week. Take care my lovelies and don't let the buggers get you next week!! Keep smiling we are fantastic and beautiful and we ARE doing this and we CAN finish it and kick its a**e!!
Love and hugs
Debs xxx

[deedee215]

Hi Jewels, How are yous all doing, Yes I did go missing for a wee while, did go away for a long weekend to a lovely quiet residential caravan site with lovely views with OH and 7yr ynephew for our anniversary felt I really needed to get away from things, came back on Tuesday. Have been so busy with visitors coming and going which can be really tiring by the time they go I just flop onto my bed. Have been trying to read back on some of the posts but so many. I agree reaching the half way mark is still quite emotional cos you know you've to do the same all over again. SE's i think I have been quite lucky with only thing I have is my toilet issues with the dreaded piles again bloody sore I tell you. Dreading this Tax on thurs the only thing onc nurse mentioned was extra steroids no mentioning of injections or anything does everyone get injections with the Tax or just some. My memory has been terrible keep losing my mob, sending txts to the wrong people ooops not a good thing to do. Putting milk in the oven the list goes on my friends are having a right laugh at me things i've been doing aww well suppose it cheers people up lol.
I see a few of you have been in Hospital Sandra, Joan and cress Hope yous are doing allright.
Fiona my god I feel for with your the pain in your foot that must be horrible hope it gets better soon for you mind and tell onc next time you go. I see this can be SE with Tax oh dear hopefully I can avoid this as I have arthritis in both soles of my feet and so far they haven't gave me much bother fingers crossed.
Chelle sounds as if you are doing not too bad on Tax hopefully it keeps up.
Jill, Gus, Jackie and Marion and everyone else I've missed out hope yous are all ok, finding it hard to keep up here lol. Something happeing to the forum I see what is it? I have facebook if anyone wants to keep in touch there you can message me. Can anyone tell me what is ANC I know Mx is Mastectomy but what is ANC ? see it is mentioned a lot with mx but for the life I can't figure it out. Its probably something Ive to get done along with my mx and I don't even know lol (doh)
Deedee xx

[YB54321]

Fiona - audible.co.uk usually has some good offers if you're a new subscriber. My dad is really into reading and I also have hundreds of books for the Kindle on discs so again if anyone needs a few new books I can send you some foc I have loads of blank discs at home so let me know what you fancy x

Jackie - meal sounds fab - glad you had a good time x

Jill -glad you've been busy and not laid up! I think you need to get the kids some keys chained around their necks lol!

Well I'm doing good - had a ride out to M&S and bought some food and a new pair of pj's and then ran around Asda avoiding the crowds as much as poss! Looks like its going to chuck it down here any time now. I don't seem to have any bone pain yet and just a bit of muscle pain in my neck. Why does it worry me when I feel better than I think I should and end up worrying its not working!

Right - think I might bake a cake - have a good day my lovelies x

[Suffolklady]

Fiona, I'm with you - what am I going to do on Monday with no thread? - it is NOT a reflection of my sad life (honest!) - but more a reflection on how important you all are, and that just knowing there's always a Jewel with a virtual hug, words of wisdom and support who knows just how I'm feeling that makes it all bearable. Doing this as a single woman, with older teenage children does mean I spend quite a bit of time on my own and all of you precious people have become an important part of my life.
Right, enough of the soppy stuff. Off to the library! Been reading like mad lately. Really recommend 'The Light between Oceans' - bit of a tear-jerker but I read it in one day! xxx

[Glasgow_Girl]

Hi everyone

Vicki - thanks for your brill comments about us being at the top of the hill and on the way back down, made me smile (not blub, for a change).

Marion - hope you got some nice food you fancy with your Llandudno shop..
I do moisturise my feet loads, with various products, will try the Boots one too. Feet still agony today, can hardly walk, so feet up on the sofa again with my chemo bag at my side.

Joan - was hoping you would be home today, tomorrow for sure hopefully. How awful for the girl in the next bed, she should be in a private room surely. How awful for you too, hearing all that 's going on, you got some headphones to listen to the radio or some music? Stay strong xx

Cress - thought you'd been MIA and hoped it was for a nice activity, not the NHS hospital. Don't blame you for losing it, quite right too. Me too yesterday, dishes in the drainer (allegedly washed) were dirty and crumbs everywhere, hoovering required. Chores been done now, after my rant. I can barely walk, let alone hoover. After BC, I will NOT be reverting back to me doing nearly everything, let's make a pact about that?? Hope you're resting at home with some TLC and the chores being done round about you?

Sandra - have PMd you back. Try contacting Paypal too if you don't get refund?
ED very funny - bit cheeky - with photo, but think we might all look like that. Prize for the Jewel with the most hair in York?
Agree, missing Deedee, hope she just busy with good stuff.

Chelle - you're right, our lustre has slipped this week, too many in hospital and too many SEs. Would love some Cava if could taste or stomach booze, maybe a cup of peppermint tea.
What's best source for audio book downloads for my ipad, do you know?

Jackie - taster meal sounds wonderful, glad you managed a bit of vino too. It's our Pearl Anniversary on Monday (30 years OMG), we had hoped to do a posh restaurant for lunch a least, but with my taste buds what a waste!. OH got day off, so we'll try and do something, assuming I can walk a bit.
OMG, no thread from Monday, how will I survive a week without all of you?

Jill - you ARE Mrs Brown, sounds like a real hoot, all the comings and goings at your house. Enjoy shopping with your Mum tomorrow.

Love to all,
Fiona
xx

[Guest user]

Ha ha Jill your kids' key saga made me laugh!! I bet you weren't laughing at 1am!!
Cress sorry I missed that you had been incarcerated too- hope you are feeling a bit better now home x

[jmeg]

Morning Jewels, Sorry not MIA just had 1 of them wks line n chemo monday then DN,Physio,Doc appts every other day why do,s a 5 min appt take up at least 2 hrs of your day.Yesterday was works team building session lol started at 9 in the morning I ditched the other 18 in the pub at 8 last night,jesus I am either a light weight or the others are pi**heads I ended up nominated driver so only got 2 halfs before going on soda,but it was a good laugh,forgot what a bunch of (mainly middle aged women )can actually discuss lol felt a bit sorry for male population in the pub think we may of been bit OTT but fellas blushed more than us LOL Wish the line had an extra tap for alchol though could solve the crap taste buds,but gained some nice wine shelved for later date.Buffet looked interesting shame about the taste.
Hadnt told my lot I was doing the pub session so first text
MS mum left my wallet n keys at yours .me tough find one of others (he stayed a few days)
D lost keys to yours and need to raid your wardrobe robbed YS keys ,me K sort out MS,make sure you return YS keys (totally dumb)
YS D got my keys going pub .me K make sure you get them back (typical lad)
1'0' clock this morning mobile rings YS "sorry to wake you forgot D had keys" SORRY !! (lucky to be alive)
And heres me thinking having adult children would make life easier,Diffentley Mrs Browns house this week.
Anyway home alone for few hours YS in work so catching up on stock for tomz the mothers picking me up 10ish for another shopping expention could be a keycutting day. Ds birthday (22) so need to find a prezzie maybe should find out what she robbed and buy her that lol least Id know she likes it.

Seems alot of us are either having good hols or resident NHS can I just ask where are the great train robbers are when we need them cos they can hi-jack my train anytime, they can even keep the proceds or at least someone get me a ticket for the Orient express.
Enjoy your day Jewels xx

[Guest user]

Oh I do wish I could take away everyone's pain. Much love to all feeling rough. Feeling very emotional today (am guessing late night and the wine tasting menu have not done me any good). But the meal was lovely - 12 courses!!!! (- to be fair, it was a tasting menu, so all very small, wonderful dishes, with accompanying wines with each course, I was rather merry despite giving some of each little glass of wine to OH). Felt almost normal For a few hours, a real treat.
, Joan that must be so hard in hospital next to someone with secondary bc, not surprising you are finding that difficult, i do hope you are better soon.
and Fiona that sounds really painful, hope your feet get better soon too.
Ha ha Gus/Clare. My name would be Amber Meadow...That doesn't sound very sexy does it, more like a children's author! I could go for second pet, second street and then I'd be Saxon Avenue, but that sounds more like a teenage metal band...
Have you all had the email saying that for a week (?) from Monday there will only be one thread on here whilst they swap over? Will miss you all!!!
Jackie

[YB54321]

Aw this isn't good Jewels - we are not very shiny this week are we! I think we need to switch from water to cava or champers don't we!

Joan - I can imagine how bad you must be feeling! Just try and focus on you and staying strong for you. Have you got maybe an MP3 player? I like to listen to audiobooks and also have a couple of relaxation and hypno ones on mine as it helps me zone out x sending you lots of love xx
On the note of audiobooks - I do have hundreds of them on my pc so if anyone has any fav authors/genre and fancies a new read just pm me and I'll pop you a copy of them on a disc and send them if I have them x

Cress- I messaged you on Facebook - hope you pick now you're home - look after yourself x

Gus - thanks for signing the petition (you're trying to confuse me now with a new name aren't you! My chemo brain struggles at the best of times currently!) I cooked steak for my parents for tea and after if pan fried them I put the tray with them on in the dishwasher instead of the oven! Good job I didn't turn it on! Thats taking sterilising the food just 1 step too far!

Fiona - I'm feeling ok today - no real pain set in yet. Hope you're feeling better x

Sandra - looking good in your profile pic doll x

Jill - not heard off you in a couple of days - hope you're not MIA as well x

Vicki - I take my hat off to you still working you really are Wonder Woman! My boss keeps hinting about me coming back but I just couldn't do it right now.

Well I did get a couple of hours of solid sleep last night and only had steroids to take this morning so hopefully the sleep fairies will visit tonight.

We still have a long journey but as Vicki said - we have come so far already so give yourselves credit for being such a strong loving & supportive bunch of ladies - I couldn't do this without you all. Big hugs xx

[Maxie]

Evening ladies,

Emma enjoy La France!...what a bonus having room for more shoes!...xx

Chelle Hope you got some rest last night/today? steroids really mess you up don't they, am dreading the double dose on Tax, they make me feel sick too Thanks so much for link to wiggy shop will check it out, had an e-mail back from the dodgy ones today so will see how my refund goes, paid via Paypal which also made me think it was a reputable company...re the sicky lady at your unit, how horrendous for her but also for you, I can't stand people being sick near me & that would've totally freaked me out...

Jayney So sorry you're feeling so bad but great advice on here from people re painkillers etc so hope it may work for you...hugs...xx

Joan, sorry you're still in hospital & feeling so bored but also witnessing the poor girl with bone mets isn't something you need right now. You would think they'd try & give the poor love her own room, how distressing for all concerned...keep your chin up lovely, you'll be out soon & put all this behind you...xx

Cheryl (Chezzap) nice to see you popping in from the Maisies!...I've been reading some of your posts & you August girls are a really chatty lot ( like us Jewels!) some of your posts have me in stitches!!...

Faye glad you've been out & about enjoying yourself, you def need to check out those York bars (& the hot totty too of course!!)...

Vicki your post just made me blub ...did a massive gulp in & sniff at the same time & OH thought I was having a turn!!...I love your analogy of Chemo Hill (although in my case feels more like Everest!) I need to start picturing myself at the top rather than at the bottom looking up at the long climb....(that way I can always slide down on my bum if it gets too tough)....xx

Marion good for you to go shopping on day 2 of chemo!...Happy memories of shopping in Llandudno, loved the little Debenhams on the retail park, the big M& S on the High St & Listers on the corner etc...xx

Gus/Clare your post your post stopped my blubbing & made me chuckle!!...My p**n star name is Clover Hogan (first pet & mums maiden name!!) & I rather like it!!
Glad you have your family & friends for support, what would we do without them eh & I'm sure you'd give the same support to them if needed!!

Cress sorry you've been a resident at hosp NHS too!...would've wound me up re washing-up too, kids can be so bloomin thoughtless at times, bet they won't make that mistake again after your outburst, sometimes thats the only way to get through to them isn't it...xx

Fiona am sending you a PM as think I've waffled on here for too long now & have a lot to say to you..xx

Well girls my new profile pic was sent to me by my darling ED who thinks this is what I'll look like next year in York..(Karaoke anyone?!!)

Have had a nice day today with BC friend, planning a walk next week with her & an Indian meal next Sat, trying to do as much as poss before the dreaded Tax the week after

Phew thats been one long post will leave you all in peace now, hope you all have good evening. Btw anyone heard from Deedee? was she going away, few of us MIA at the mo but hopefully just down to school hols etc..

Sandra xx

[Suffolklady]

Hello my lovelies,
I'm back home after a 2 day stay in hospital. Seems like there's been something in the water. I've read all the posts, please forgive me for the lack of individual comments - I'm feeling a bit tired and woozy!
Sorry for the Tax ladies who are suffering, It's tough - but if I can do it 3 times, then you all can.
Came home to find no washing up had been done when I was away and I completely LOST IT. Felt really awful afterwards but I was so disappointed and upset.....
For those of you on or going on, holiday, have a fab time and to those at home, have a fab time. Shine on... 🙂 xxxxxx

[fimbo123]

Was told by a lovely (though not dishy - sorry!) onc registrar this afternoon that I could probably go home tomorrow as my neutrophils are sky high (GCSF injections have finally done their job). Was so pleased. Now they have told me the blood cultures that have just come back from my Picc line have shown I have a staph infection, so I need to stay in until at least Sunday for more IV antibiotics. Plus my next dose of Tax will probably be reduced - not sure how I feel about that.

I can cope with the boredom, but the worst thing is the girl in the bed next to me is younger than me and has secondary BC in her bones. She is in so much pain. It is really freaking me out. I am so upset about it, I don't know how to tune it out of my head. She has lots of visitors and lots of staff round her a lot and I hear all the stuff.... It is hard enough to ignore all those fears in your head, but it's right in front of me day and night now. Please let me home! 😞

Sorry for everyone else who is having a hard time, especially Fiona with your feet (my hands are bad enough, feet must be worse).

So glad you are all here xxxx

[Gussie_WW]

Chelle, petition signed with my Sunday name that no-one except officialdom uses! My mum decided Jane Clare sounded better than Clare Jane, and then brought me up as Clare anyway. Which I now have to explain in every official setting, including the onc ward. Happy to answer to Gus or Clare on here. J Been Gus on the internets for 10+ years, habit dies hard, started out to separate work from playtime internet activity & it stuck. (Gussie Westward is my p*rn star name – my first pet was a hamster called Gussie & I lived on Westward Road).
Phew, glad that’s all out in the open. 😉

Joan – so sorry you’re incarcerated, though it’s good to know low neutrophils reflect chemo doing its job! Hope you’re not too bored on the ward. Hope you have mags or a book or headphones.

Justin, sorry Sandra, bummer about the wig. Maybe put it on ebay as a JB costume?
Emma, hope you have a fab holiday. Sounds just the ticket.
Jayney, really sorry to hear how you’ve been. It’s no consolation but I felt exactly as you describe in your 0817 post over the last couple of days (& I haven’t even started tax yet, which doesn’t bode well). Hope you got some support from your chemo unit. It’s grim grim grim, isn’t it? We’re all here for you. Keep posting when you can / need to. {{hugs}}

Fiona, sounds like you’re also going thru the mill too. I think my mum wishes I would open up to her, but I can’t stop trying to protect her (she’s in her own circle of hell 300 miles south, with my dad in a rehab unit after yet another stroke). I did blurt out the entire inside of head to my poor sister live on skype last night. Just glad we have family and friends who can listen.

As for lymph nodes, 5/8 of mine that were removed in the lumpectomy had cancer, so I have an op scheduled to remove the remaining nodes after chemo finishes. I tell myself any cancer in the remaining is being zapped by the chemo, but it makes me panic a bit if I stop to think about it or at 3am when I wake with a jolt…
Vicki, thanks for your positive words. You’re right of course, we are right in the middle of things here. No wonder it feels as bleak as hell.

Hang in there Jewels. xx

[Marionblue]

Tax / Carbo 6 Cycles Herceptin 18 cycles - Cycle 5 - Day 2

Afternoon/Evening Lovely ones

Managed a few hours sleep last night which was nice. Got up nice and early for breakfast so that I got through the steroids early and hope for sleep tonight.
Bit tired but not too bad today. Have been to Llanudno for weekly shop but glad to be back home. Start stomach injections tomorrow (7 days) but will start paracetamol today and hope to keep worst of aches and pains at bay.

Fiona - Must be horrible having sore feet as you can't help but use them. I have used Boots Gorgeous Feet Intensive Moisturiser for about 2 years which has kept the skin on my feet really soft and supple and I am sure has helped me not have foot problems even after 5 doeses of Tax. I'm always amzed by how much you manage to post, my brain gets frazzled after a few lines.

Vicki - It is such a long haul. I have 6th and final Tax in 3 weeks but it still seems like a job to do and you just never know when a new SE will bite you on the bottom.

Hope all you holiday makers are having fun, I'm jealous.

Glad I got out today as rain forcast for tomorrow. Have as good a week-end as you can sparklies.

Marion
XXX

[artemis17]

Just to say hope people are doing ok, the Tax side effects sufferers keeps on growing 😞 its good to know the tips re painkillers though, so to those Jewels, take it easy on yourself and hope they soon reduce. there will be a few more of us changing over in the next week or so too.

To those lucky galavanting travellers, have a ball and eat drink and be merry!!.

Its all bloody tough work and isnt likely to ease anytime soon but there is an end in sight, if you read back to some of either our early posts or the newer months you'll see what weve achieved. We are at the top of the chemo hill, ok the way down has some pretty scary ledges, potholes and we will feel as if we're gonna fall and not get up but each horrible step is on the way down and at the bottom theres a bit of respite before the rads, hereceptin, further surgery etc, BUT we are getting through it and when we look back at the hill we've conquered then we will feel proud. We doubt we can do it, but we will, thats whats so blooming fantastic about us Jewels, we may be on a crappy journey but with a great bunch of ladies who are there every step of the way, whether we post daily, weekly or just read, we are all there for each other!!!!.

The rains stopped and the suns out so maybe the w/e will be nicer too. Even though im in the middle of the low immnue bit as i did so little last week im planning something even if its a nice long walk!.

Ok so enough of me blethering on, better get a few work bits logged then look forward to some me time. may even have a cheeky vino, its been a while...

take care one and all
xxxx

edited to say "Fiona we crossed posted"

[Glasgow_Girl]

Hello my lovelies,

Tax cycle 1, day 9.
Well, I'm stuck on the sofa (either here or bed since yesterday lunchtime). Went out yesterday morning uni shopping (bedding, kitchen stuff etc) with daughter as planned. Back home, could hardly walk. Left red heel from Tues, Wed was now both soles of feet red, hot and sore plus 2 enormous water blisters, one on outside edge of each heel. Checked on here, thanks for all your advice on that, checked Macmillan site and phoned onc nurse. She not unduly worried, it is a Tax SE, not common, but not uncommon (whatever that means!). She said to continue taking antibiotics which my GP prescribed and plaster with E45 to avoid dryness and any broken skin. It should improve but if really bad to phone back. I've also been bathing feet in warm water with salt in it.
Also had the runs today, so hobbled to the loo on my poor feet. Taken Imodium, so hope that does the trick. Zilch appetite, food tastes awful anyway, so just sticking to fluids. Was supposed to be out tonight to celebtrate friend's birthday at local pub/restaurant, so that's not happening - couldn't walk there and jiippy tum. Trying to persuade OH to go, he could do with a night out, but he not keen to go without me (aaww) and he "doesn't want our friends to be asking him about me all night" (well, excuse me for having cancer, I was so cross with him).
Lots to cacth up on, apologies if I miss anyone, doesn't mean I haven't read and empathised with all of the posts. Also sorry if I get any of you muddled up - combo of chemo brain, jippy tum, very sore feet and not being able to scroll back. Hugs to you all.

Chelle - thanks for updated list, we just couldn't manage without you. You're having a few problems at the moment, is the injection site ok? How's the sleeping? I'm sleeping, well more napping, loads but still feel exhausted.

Vicki- thanks for lovely comments about being a Mum and about our Mums (sorry you don't have yours to support you through all this). I phoned her yesterday determined to be "brave", but started blubbing again. She was just lovely and calm and told me she is my Mum and that's all that matters and she wishes she could bare the suffering for me. What else can I say? We did chat about other things and had a laugh too, she really is amazing for her age.
Interesting comment re the contraceptive pill and not something any of my medical team have asked me about. I took it for 12 years, at which my daughter is horrified- she been taking it for about a year and told it not recommended to be taken long term.

Jackie - thanks also for your Mum thoughts. My Mum is a tough cookie, I am usually too but I'm rubbish at the moment, more like a crumbly melting moment than a tough hard ginger nut! ( Not sure that biccie analogy works really). How was your posh meal?

Emma - lovely piccie of you and niece, what a great girl overcoming a serious illness and gaining a 1st at Cambridge. Enjoy hols, know what you mean about all the low-cut clothes, I have chucked out so much stuff due to lack of cleavage! Daughter on a mission to restyle me anyway and I have bought a few new things which I'm really happy with, I am lucky having my own stylist/ personal shopper. Adieu, j'espere que tu passe les tres bonnes vacances!

Sandra - glad you not in hospital too long, but you did the right thing phoning in. I am slatherinig the E45 on my feet and have feet up most of the time. I am walking on the balls of my feet, they are slightly less sore than the heels. Didn't realise what your photo was - I'm obviously not down with the kids as I like to think - is it Justin Bieber? Too bad about that wig website, don't give up trying to get your money back.

Joan - poor you, stuck in hospital, you must be so bored, maybe they'll kick you out for the weekend? Take advantage of the rest at least. As I'm a day behind you, I will keep checking my temp to be sure. And you've got sore hands as well, what a shame. My hands are ok, a bit tender, but nothing compared to my plates of meat. Like you, not sure I'd want the next dose of Tax reduced because of the hand/foot problems, I'd only worry about that and it would defo mess with my head re not getting rid of the BC.
Re lymph nodes, ditto what Sandra has said really. Initiially with mammograms, biopsies etc I was told mine were probably ok. Had a few removed with MX, after tests 2 of these were positive. I had ANC a few weeks later, after tests the rest were all clear, so 2/16 for me. So I think it is true they can't tell for sure about lymph nodes until surgery. Do try and put it out of your mind for now, I know it's so hard with everything swimming about inside your head.

Izzy - thanks for the hug. Sending one back to you too.

Marion - glad everything not too bad yesterday. How are you today?

Jayney - ditto re Tax, it is tough isn't it? Join hands and we'll get there together.

Faye - yes, I do need my Mum, wish she was nearby, 400 miles away. Would love a hug from her (her homemade fruit loaf might be good too). Glad you had such a lovely day yesterday and enjoy time in York, check out the cocktail bars for us? Particularly those that could cope with a group of follicly-challenged, man-mad (well Chelle and Cress anyway) women determined to celebrate and have a fantastic time.

Love to you all, my precious ones,

Fiona
xx

[Flip_flop]

Morning spaklies,
i need to get out of the habit at getting up at 11am, wont know whats hit me when i go back to work.
joan- sorry to hear you have been incarcerated, but unfotunately its the best place to be to get you back on the mend. Sending you a big hugs filled with neutrophils to get them back up. Hopefully you will be out soon.
emma and izzy - have fab holidays in france.
nicj - hope greece is going good and no more choking incidents. try and have a good relax whilst there.
vicki- glad you are feeling normal again, know what you mean about cycle 3 hitting harder.
marion- glad all ok at the bar yesterday.
jackie- how was the meal?? Hope you got all dolled up and had a great time.
sandra- sorry you had to sample a and e, glad youre back home. What a bummer about your wig, i'm finding there all a bit hit and miss.
chelle- petition signed. Hope you managed some sleep last night.
fiona - dont stress about crying in front of your mum, sometimes you just need your mum. big hugs.
jayney- bless you feeling so rough, hopefully the suggestions will make it more bearable. Big hugs.
sorry if missed anyone off. Love to all jewels- a few missing lately.
i had a nice day yesterday, went out for lunch with my sister for lunch and then last night some girls from one of my jobs came round and we sat in the garden with wine and had a good laugh.
off to york for the night later with oh. Chelle and cress, will keep and eye out for bars and restaurants that are heavily populated with hot totty for when we go.
faye x

[chezzap]

yes cheers its getting there with the cocodamol

[YB54321]

Cheryl - just saw your post - seems to have stopped now - thanks for asking - my stomach is not in good shape with all the blood thinning injections so its hard to find a patch of flab that isn't already black & blue! Hope you're portacath pain has eased x

[YB54321]

Morning ladies,

Sorry Jayney that you're feeling so bad - I'm 1 day behind you on this cycle so I keep waiting for something to happen. Ive got Gelclair & Difflam for sore mouth and Nystatin for oral thrush just in case. I'be taken 1 cocodamol every 4 hours since yesterday lunchtime and so far no pain (prob speaking too soon!) I still find gargling with cold pre-boiled salt water keeps my mouth in best shape though every 4 hours. Hope you start picking up soon but do speak to your unit if not - don't suffer!

Joan - so sorry you're still locked in but suppose its better to be safe! Know what you mean about being round sick people - lady 2 seats down from me when I had chemo on Weds was so sick for about 3 hours and I felt so sorry for her but kept thinking I was going to pick up germs! I must have used a full tube of anti-bac gel! The site from my injection seems to have stopped bleeding now thank goodness!

Sandra don't know if the style is what you're looking for but Simply Wigs (UK site) has a Rene of Paris wig called Jade on at half price for today at £45.50 - some nice colours and postage for 99p plus you can fill a form in to reclaim the VAT so under £40 total. If you search the name of the wig on Google there are some videos where you can see it better x

[chezzap]

chelle you may have just hit a capillary - how is it this morning???

[jayney234]

Thanks Joan and Maryland for the much needed boost. It is horrible how you suddenly feel very alone and scared in the middle of it all. Joan I hope your stay is a short one and we will give each other a shove towards the finish line. Jayneyxx

[fimbo123]

Hi Jayney I really feel for you. I was exactly the same. It wore off a lot by day 9, although that's when I went neutropenic (but that probably won't happen to you). I too wonder how on earth I'll do 2, possibly 3, more, but I'm hoping the next 12 days will give me a break to recover my strength and energy. I think it's a bit like childbirth - when you've just done it you think you could never do that again, but once enough time has passed you can. Sending you lots of virtual hugs, you will get through this xx

Still in hotel NHS for the time being as temp went up to 38 again last night, so I guess it's the best place to be, but not good for the morale being surrounded by very ill people 😞 (how selfish is that of me but I am in survival mode). Feel well during the day and very bored.

Sandra, thanks for your words of comfort - it had better be doing a good job for all this trouble I'm going through!!

Chelle, hope you got a good night's sleep and that your injection site has stopped bleeding.

xxx

[Maryland]

Hi jayney234....just over a year ago I felt exactly like you after 'switch' to TAX from FEC. As Lucy says do phone your chemo unit or GP for help with sore mouth....may be oral thrush. Pineapple ice lollies were helpful, as was Gelclair for mouth ulcers. My Onc said the aches and pains are partly caused by the change of regime on our bodies, by TAX itself and the 'white blood cell' boosting injections. I worked through chemo, but spent 2 days on bed after 1st TAX. Best advice I can offer is to start taking painkillers on day 2 for next cycle, whether you ache or not. This 'turns off' pain receptors and if continued for 5 to 7 days, cycles 5 and 6 should be less painful (were for me, and for others I've read on the forum). I found taking 2 para every 4 hours and an ibuprofen in between worked for me, although others had stronger painkillers. Check with your medical team or pharmacist. Hope this helps? Take care x

[jayney234]

Thanks. I feel quite pathetic being so negative but I think it's all got a bit too much now.