'June Jewels' - Precious and shining through :)

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1481

Hi again Chelle, thanks for replying…i definately havent got anything other than the ones ive said so guess im not getting any. They didnt mention them in the handful of drugs that i was given before hand either. i will see how tonight goes then i can the unit tomorrow anyway so will check then. Appreciate you girls so much.

Sorry for the self obsessed mail, i will do a proper catch up tomorrow or whenever, hope no-one struggling too much anyway. have a good eve, im off for some soup though dont feel hungry and my spaced out feeling getting worse,but other than that im tip top lol…
xxx

1482

Good evening everyone.

Back home safe afer trip to the bar - had to wait quite a long time to get served but I was well behaved and got there in the end. Feeling ok but just as spaced out as last time and quite tired - think that’s just release of tension. Last time the nurse told me to take Granisetron (my stronger anti-sickness) before bedtime, but today a different nurse said I shouldn’t take it until tomorrow morning, although I can take Domperidone tonight. So just hoping that doesn’t make a change in my sickness from last time.

Vicki, good to hear from you. I hate the spaced out bit. I bought a waterproof picc line cover from Boots to keep my line dry in the shower. Have to say a tiny bit of water still gets in but so far it hasn’t got on the dressing.

Meggy, my eyebrows and lashes are still intact, but I think they often go later than head hair. I’ve been putting Mavolo conditioner on them, not sure if it’ll help or not.

Jackie, so sorry you’re feeling low. I totally understand about feeling bad for your children as I feel exactly the same (mine are 6, 9 and 12). I try to take inspiration from my aunt who had BC 15 years ago - MX, anc (2 nodes positive), chemo and rads - and she has been fine ever since. I’m glad to hear all the other amazing stories too.

Cazzer, Gus and Titus4t, hope you’re doing ok.

Off to veg out now - love to you all xx

1483

Thanks everyone for your support, cheered me up no end.
Chelle- iPhone down toilet?? Oh no. Perhaps our knickernets should have an iphone pocket. But at least you are home, at last.
Glad to hear that those of you at the bar today so far seem to be ok, may your se’s be small ones.
Is it too early for bed…?

1484

Good Evening Jewels!
Hope you are all doing ok today. Well this is the first day after my first trip to the bar testerday (TC x 4) and I feel mildy flu like. If this is as bad as it gets then I can cope. i keep waiting for something else to kick in and am just hoping it wont. Have drunk sooooooo much water for two days now I am sure I must be flushing it all out, fingers crossed!!! Got slightly obsessed with the new ‘in the ear thermometer thingy’ last night after my temperature crept up. However husband pointed out I had a large fleece on, took it off and things improved! DOH
Hope all you ladies at the bar today dont get to many SE’s and a good nights sleep.
Hugs xxx

1485

Cress, Katherine, Jackie, Fi & Fiona - all the best at the bar tomorrow ladies - get you lippy and your cocktail dresses on x

Fiona - had a chat with my BC nurse before I left as I’m started to shed some hair but not loads yet and she also said at least try the CC for cycle 2 as you’ll know by that time if it’s working or not but the shedding should slow down after that if it is working. Keep your chin up sweetie - every lady on here is beautiful with or without hair because they have a caring soul. We may have obvious battle scars but this disease can’t take away the good people we all are xx

Lins - sorry you also ended up in hospital! At least we are out now! although am worried about Martha as silence usually means she back in hospital! Hope you’re ok my lovely x

I’ll catch up properly tomorrow - just need to curl up in my own bed for a while xx

nighty night xx

1486

Meggy - my hair has thinned dreadfully over the last few days, but eyebrows and lashes are still intact. Think they go later than head hair though.

Chelle - glad you’re home, sorry about the iphone, how on earth did it end up down the loo?. Thanks for the cold cap advice - I WILL try it again tomorrow - and I’ll try getting my chin off the floor, bless you for your kind words. Hope you sleep tight and have sweet dreams back in your own bed.

Worried about Martha, hope we hear from her soon.

Night everyone, off to bed.

Fiona
xx

1487

I was in a private room at the hosp but the door doesn’t lock for obvious reasons so I thought it was safer to take my phone into the bathroom in case someone came in and pinched it and as I went to put it on the shelf next to the sink I dropped it straight down the pan! (Only saving grace is it happened on way into bathroom if you catch my drift!) it’s currently sat in a tupperware dish with some silica gel in the hope it’ll dry out or that £500 literally down the pan!

Oh and I won less than £3 on the lottery so Mauritius may have to wait a tad longer x

1488

Chelle, if it doesn’t dry out - try taking it to your local Apple store - I have heard of people being given reconditioned iphones/ipads for free or for very low cost… might be worth trying? A friend bust my ipad screen and the store swapped it for a ‘like new’ one for a very low ££.

Should be sleeping but the plane was delayed by nearly 3 hours so I arrived home at 12.30 pm - and am now on my pre-chemo steroid ‘high’ - Oh well… best get used to this feeling.

1489

FEC-T x 6, FEC Cycle 1, day 16
Evening Y’all,

What a load of posts to catch up on and what a range of emotions, tears to laughter – this is such a fantastic forum girls – when we get together we will know everything about each other from bowel movements to the state of our flower gardens! I am sure I am not the only one here who is soo terribly grateful that we have somewhere to vent our anger / despair and take the micky out of each other – this is only possible as sadly we are all in the same boat…

Martha – AWOL again – I really do hope that you are OK… please can we have your home phone number… these silences worry me! If I knew where you lived I’d be round!!!

Chelle – you and your antics! Bummer about your phone! Keep doing the EuroMillions - Mauritius sounds fab – I’m sooo in!

Lins – my drinking partner – sorry to hear of your hospital visit xxx

NicJ – how did you get on with the onc? Did you get a ‘line’ agreed? Hope your side effects are easing… I got the discharge too – appeared from no where!!!

Ann (March13) – glad the Emend worked on the sickness but OMG you poor thing fainting in the bathroom… hope you feel a bit better now xx

Trish – you sound local to me – visiting a wig shop in Brighton (Trendco by chance?) – you can join the Southern Lushes on the York trip! :slight_smile:

Paula – welcome to the Jewels! I’m on 6 x FEC-T too then 4 weeks of radiotherapy. I’ve already had a double mastectomy (30<sup>th</sup> April – feels like a lifetime ago!). I was working full-time as a Sales and Marketing manager for a very busy company, juggling 5 children, house etc etc. I decided that I wouldn’t work through chemo as I knew it would be hard and any energy I had would need to be spent on the children. For me this was the right decision. The only other thing I have noticed is my ‘chemo head’ is terrible – deciding what to make for tea is hard enough!!! Good luck to you xxx

Cassie – well done for cracking on with the second round. I feel the same, friends and family offering help but I just want to get on with it as normal and then think (as I’m shouting at the youngest 3 kids to go to sleep / do their homework / stop flghting etc) why don’t I accept the help?! This BC thing is tiring to say the least!

Cazzer1970 – how did your first bar visit go? Hope your results were ok… x

Maxie – cant believe you got a foot massage on your first visit to the bar!!! I’m writing to BUPA to complain about the shoddy service I got! Well done for doing it in style! Sorry you’ve felt so crap since…

Jan – welcome on board!

Janet – best of luck for Friday! Your cocktail hour wont be as bad as you suspect! Thinking of you… I too miss work! X

Vicki – congratulations on your inaugural bar visit!

Marion – if you are still really bored I have a heap of ironing that needs doing, oh the kids clothes need sorting too (cannot stand sorting the sizes out – been putting this off since winter!!!) x

Cress – did you manage to bring any hot Italians back?!

Debbie – so sad about your cat :frowning: and Fi (Satsuma) your dog :frowning: losing a family pet at this time is especially hard xxx

Joan – your ode to your hair made me blub. You’re one brave young lady xxx

Jill(jmeg) – loving the PAST idea, with jewels on! :slight_smile:

Emma(Peachy) – I was like you at the start… went to sleep at dawn a couple of times at the start and still managed to bounce out of bed to sort out the kids and take them to play group / school – perhaps I need these permanently – imagine how much you’d get completed each day!

Jackiebee – sorry your feeling so down. I too have my moments when I look at my children… we have to live for the moment and make it count…. Big hug. Best of luck at the bar today xxx

Fiona – massive hug. I’ve never been one to wish time away as it flies by quickly enough by itself… but I so wish I could fast forward to 2014. I’ve been in a ‘black’ mood all week… just glum and fed up with knowing what the following months hold. xx

Meggy-Moo – I cold-capped on my first session, pleased to say I haven’t shed any hair… yet! As for my flower garden, that is a completely different subject… I need a mini vac as I believe the pitch to Dragons Den for the ‘knickernets’ is yet to happen?! Leg and pit hair still there / growing slowly. I plucked my eyebrows yesterday and they just ‘slid out’ – not a good sign!!!

Debbie (Pointy) – hope your side effects continue to be minimal.

Well ladies, I’d better hit the sack. Been busy with two sports days and the kids. Husband has been in Dubai for the week and due back tomorrow night – help at last! :slight_smile: New school visit for my 4 year old daughter tomorrow and Oncologist appoiument tomorrow night in prepartiom for round 2 on Tuesday. Goodness me this drags on doesn’t it!
Oh, also better get my arse into gear and get packing for a weekend at Corfe Castle camping!!!

Keep safe and shining Jewels!
Becky xxx

1490

Fec x 6 cycle 2 day 4
wow Becky what a marathon post.
Went to see Onc he asked how I was coping so gave him a list of the SE’s as you do, he then offered to reduce my cocktail intake, less of the red stuff in particular. However I decided that all though it has been very annoying and draining I didn’t have to be hospitalised and now I know what to look out for and what to do about it that I would rather stick with the regimen cos they don’t really know the effect of reducing the dose. It was agreed that I do seem to be unusually sensitive, hair loss etc earlier than most but since blood count is good, we will see how I go after next time. He advised being proactive and if I think something is going to be painful such as the reaction I had to bone marrow injections then go for the drugs before I need them or as early as pos rather than waiting for things to get worse. I can roll with that.
I have assessed for a PICC line and my bartender saw me there and said thank God for that! So I think that’s a positive. I also asked about my Greek holiday in August and onc is very encouraging about me going, it’s the nurses who all do a sharp intake of breath and tut about it. I think tho that onc is looking at the bigger picture.
While that was going on my twin autistic boys were trying out 6th form colleges which has thrown up new battle grounds to ensure they get the support they need. One of them is severely autistic, but is doing gcse higher maths in his own unique way, loves Shakespeare and doing French at entry level in a gcse class, however the college had him in a group where they were practising to write there their own names and the staff didnt seem to recognise that this would not be a good match for anyone. Also I have demanded a meet at 8.30 this morning with the current school head as one of the support assistants took the opportunity of everyone else who works with my boys being absent, cause trouble - not a team player and out of step with everyone else. So my side effects will just have to hang fire while I get angry.
So. Side effects
hair loss - hit me very early 10 days. Had already decided to go for the head shave event -see earlier posts. And th lady who did it said that she could see it was going and that it looked sensitive. the shaved hair look didn’t last many days as the rest of the hair is almost all gone. My scalp is very sensitive and sore so the wig is very uncomfortable so have taken to soft caps and things mostly annabandanna. Lady jungle slashed and burned, armpit gone and arms, leg hair hanging on but eyebrows thinning. Skin is sensitive too. So have taken to soaking in oilatum or other ecszema type stuff in a warm bath and that helps. Also bucketloads of unperfumed moisturiser.
Nails - very brittle and bendy - constant filing with a soft block thing don’t know what called has a different effect on search side to buff nails. More moisturiser.
eyss - sunglasses when out also helps with headache. Cooled cucumber slices and eyemasks kept in fridge use them when just chilling.
headache - have combination of naproxen which also helps with the bone ache, co codamol and paracetamol. Also the gelled headache strips. avoid coffee, tea and chocolate tho gone off milky drinks anyway.
Slight nose bleeds - can feel them building as cold lump behind nose so stop doing stuff lie down eye type masks on, careful not to blow too hard, if more than slight blood then lean forward pinch bridge of nose etc but never been much so far. When it is I will call for help.
sore gums - avoid boiled sweets, crisps etc, use aloe Vera toothpaste on soft brush and use cool mouthwash or salt water.
mouth ulcers - bongela until you can get some gelclair prescribed.
with the constipation, diaahorea and sickness, ensure that the bathroom is a pleasant place to be and you have cleaning products gloves, tissues, soft botty wet wipes, face wipes, something comfy to kneel on and entertainment. Think like a man and accept that you may need to sit there awhile until mission accomplished. Possible avoid taking phone in after the Chelle experience?
Look at all the anti sick things you have been give cos we are all getting a bit of a variation and ask for an explanation of them and the effects of changing or adding. I took all of my anti sick meds and macrogel (anti constipation) the day before in prep and I think it did have an effect. I was also then given Emend so although feeling sick and nauseous and retching, not actually sick and bowels although not right better than last time. Eat anything to produce soft stools - dried prunes etc unless of course yours is the other problem. Fresh fruit and veg a must also oily fish, tuna, salmon, sardines, mackerel - if dont like these change attitude and think of them as good medicine.
Bad taste, dry mouth - anything that works for you, Gin Gins, pineapple etc, I found Ginger ice pops, fruit frozen smoothies and Lemon Lime flavoured all good And also make my own. Citroen presse - Fresh lemon, or lime with small amount sugar and cold water. Drink loads have bottles everywhere to sip from. Fruit teas eg cranberry, raspberry etc also some are diuretics for the steroid bloating.
reaction to Bone marrow injections - pain around kidneys lower back, pelvis into thighs and spasms very bony ache. Take all painkillers and call helpline. I got diazepam urgently delivered and some liquid morphine then just floated away while it all passed.
vag discharge - pads ! gross!!
red itchy skin and spotty, - eczesma stuff and loads of fluids.
bloating water retention - keep drinking and try natural diuretics.
PLEASE REMEMBER. It is unusual to get all of these I am particularly sensitive to this stuff, it isnt necessarily going to happen to you.
mine have not been severe enough to be hospitalised but I have called the helpline and got help and then checked by a Gp. My temperature has remained steady. I have still managed to run the house, do a bit of veg gardening, walk dog and other bits and pieces but have also known when to stop and just chill. OH works away so also had to put contingencies in place and rely on friends, I have no family here, they are all 90 miles away and have other challenges - see earlier posts!
i am no different from anyone else I have major downtimes and have playlists to cry to and playlists to pick me up again, my relationship with OH is challenging and needs to be useful but not overwhelmed by all the more emotional stuff us girls have. Which can be very draining and disappointing.
it all sounds quite grim but no one said it was going to be a walk in the park. So head up shoulders back knickers up, hands washed and on we go.

I am not medically trained so talk to your own teams and lets keep this party going.
Nicj xxx
ps
school awards ceremony tonight and one of my boys has 2. Bringing my mum up to see it for first time and then Indian takeaway - perfect.

1491

thank you for the good wishes, cnnt start chemo now till Friday, docs made ----up with prescription and did’nt prescribe herceptin (have now lost faith in the unit) nurse did nt know about it, if I had nt asked it would have been missed all together. so now i have to have it today, will take about 6 hours, and then go back tomorrow for the poision another 6 hours, also can nt put in a picc line this time, so it seems basically hard luck will have to let them poke about for non exsisting veins. if they can get this wrong i wonder what else will happen.
sorry for rant, dont know what else to do.
good luck to you and everyone
Katherine

1492

Hi Pointy we lost our amazing cat George on Sunday- hit by car and disappeared. His brother had already packed his bags and moved in with a neighbour down the road. So I know how you feel-it’s hard to nap on my own now! I think we’ll wait til this chemo lark is over before taking another cat from local rescue. meanwhile we still have one little old cat who is quite a character and very comforting.

1493
  • Suffolklady - Cress 27/6
  • Jackiebee - Jackie 27/6
  • Satsuma - Fi 27/6
  • Glasgow Girl - Fiona 27/6 (cycle 2)
  • Janet C - Janet 28/6
  • Katherine10 - Katherine 28/6
  • LinsLleisio - Lins 2/7 (cycle 2)
  • BeckyJoan - Becky 2/7 (cycle 2)
  • jayney234 - 2/7 (cycle 2)
  • ChelleB15 - Chelle 3/7 (cycle 2)
  • Marionblue - 4/7 (cycle 3)
  • Spurs79 - Claire 4/7 (cycle 2)
  • Flip Flop - Faye 4/7 (cycle 2)
  • TaylorJ - 4/7 (cycle 2)
  • ethel1 - Elizabeth 8/7 (cycle 2)
  • Esther_1986 - Est 8/7 (cycle 2)
  • Meggy-moo - Meggy 10/7 (cycle 2)
  • MarthasSOS - Martha 10/7 (cycle 3)
  • pat_1949 - Pat 11/7 (cycle 2)
  • Melrose15 - Emma 11/7 (cycle 2)
  • Deedee215 - Deedee 11/7 (cycle 2)
  • March13 - Ann 11/7 (cycle 3)
  • LaineyK - Lainey 12/7 (cycle 2)
  • Linsey 50 - 12/7 (cycle 2)
  • Trish1303 - Trish 12/6 (cycle 2)
  • ambercatz - Jan - 12/7 (cycle 2)
  • PeachyPal - Emma 13/7 (cycle 2)
  • jmeg - Jill 15/7 (cycle 2)
  • Cassie1 - Jayne 15/7 (cycle 3)
  • NicJ - NicJ 15/7 (cycle 3)
  • Maxie - Maxie 16/7 (cycle 2)
  • pointy - Debs 16/7 (cycle 2)
  • flippantfox - 16/7 (cycle 3)
  • Artemis17 - Vicki 17/7 (cycle 2)
  • Gussie-WW - Gus 17/7 (cycle 2)
  • cazzer1970 - 17/7 (cycle 2)
  • Fimbo 123 - Joan 17/7 (cycle 3)
  • titus4t - 17/7 (cycle 3)
1494

Aw Katherine that sucks! Good job you were on the ball x

NicJ - great post and hope you have a good night tonight, you must be really proud x

Becky - I don’t know how you manage your posts! I have trouble remembering 2 or 3 names at the moment! You must have a list of notes as long as my arm lol glad you are still managing to be super mum x

Cress - prob no bad thing having your plane delayed at least it kept your brain occupied! Hope those nails are looking especially slutty today x

Jackie, Cress, Fi & Fiona - drink plenty of fluids and hope your SEs are small x

Martha - really worried now … Really hope you are ok x

1495

FEC-T x6 cycle 1day 2 (in the big brother house :-))

Firstly good luck tpday Cress, Jackie, fi and fiona…especially as it’s been a long wait for some of you. I felt the same I did have a wee tear as the first red one went in but otherwise found it fine. The cold cap was hard felt like my head was in a vice but after 20mins it was just heavy.

Becky and Nicj you are the super mums of the jewels a true inspiration. Hope the prize giving gods pk nic and Becky enjoy Corfe Castle not a million miles from me.

Glad you’re home and doing ok Chelle, hope that’s your only hospital incarceration! oh my next bender is 17th July bloods willing. On my phone so excuse mistakes and brevity of post!

I feel fine really bit nauseous and hungover but maybe its all still to come, I am sat waiting lol. The emends doing its jobs. Def no steroids and have bone marrow jabs from Sunday. One small concern is ive been called for an ultra sound on my “good” boob as its showing a bit of fluid leaking which is how my left side raised my concern. Thinking positive though…

Pk well I’m off for a tasty bowl of cardboard aka all bran.

Have a good day every one hopefully my fellow drinkers are feeling okay too.

Love to all catch up again soon. Xxxx

1496

couldn’t sleep AT ALL last night - very weird, not tossing and turning, just lying awake in the dark thinking ‘I’m awake’! Feel ok this morning and the slutty nails and I are ready for the show. I did bring some Italians back, one, a pair of very nice shoes, and two, a bag to match!

Been thinking about the Bald Babes on Tour 2014 - Love the PAST idea. When our year 8’s leave, they order a hoodie which comes in a whole variety of different colours and on the back the last two digits of the year they are leaving in is made up of all of their names and I always thought they looked like a collection of skittles - they are so bright! So this is JUST an idea - what about we look into T shirts with whatever logo on the front and then (if they can do it) JJ on the back made up of all of our names - real or BCC forum names - if we all have different colours then we’ll look like Jewels too!! thoughts?
Not at the bar until 2.30 so will be lurking no doubt - although I see the fridge needs a bit of a clean! Apparently, they don’t clean themselves…
Have a great day, love to you all and special hugs to those joining me at Happy Hour. xxx

1497

Crossed posts cress good luck lady show them your best side. …xx

1498

NicJ , you put me to shame! Frankly all I have in day three of cycle one is worsening flu like symptoms. I also have the luxury of no children at home and am just chilling and pottering. I did not drink as much water yesterday and think that was a mistake.
Penny47 - so so sorry to hear about George, it is so sad and distressing and our little Dorothy was so vocal it is very quiet around here. However OH had a rose called 'Dorothy" delivered yesterday so that it can go in the garden in her memory! (bless didnt know he had it in him!).
Lin , how was cycle 2 TC? Are the symptoms much the same as the first time or do they worsen?
Chelle , hope your phone does not turn out to be an expensive splash!!
Reading these posts it appears that some of you guys are actually managing to go away? I have cancelled numerous trips as I thought i could not really go to far? Does anyone know how long after the end of chemo the rads start? I sort of assumed straight away and was going to book a MEGA luxury holiday for mid October but someone mentioned 3-4 weeks after chemo finishes to me the other day! Noooooooooooo Can anyone confirm?
Good luck to all at the bar today!
Deb xx

G

1499

Jewels have I missed a get together chance and can I join please? Sorry not been here long and can’t find much about it in past posts…apologies if its an exclusive!
Deb xx

1500

Deb, I’ve been told one month rest between Chemo and Rads and I know I speak for everyone when i say you are welcome of course to our get together, we’re planning to meet in York - sometime next year when we’re all done and dusted.

My daughter is called Dorothy! I love the name!

x