'June Jewels' - Precious and shining through :)

[Satsuma]

FECx6 cycle 1 day 1!!
I'm now home and feeling pretty fine after a long day at the chemo unit (9-5.30). It took a wee while to get the cold cap organised and they put it on for 45 mins pre chemo. But then they had problems findin a vein which we'd expected as they had already said I'd get a picc line fitted before cycle 2. This mean I actually had the cap on for about 2 hours before a cannula was successfully in and the drugs started. They took it really slow and said that was better for the first time. apart from a slightly fuzzy head i felt ok. Cap was left on for a bit afteawards and eventually removed after a marathon 6 hrs! Have to say it felt not too unpleasant at all apart from first 10 minS as others have said. The staff were all lovely and it was a calm and quite relaxing experience- so I'm happy so far.
i have some anti sickness - ondansetron and domperidone, and steroids dexamethasone for a couple of days. Fingers crossed I continue to feel like now 🙂
having my tea made for me and just planning to chill now. I hope everyone else at the bar yesterday and today had a good time, and all the best for those next. A wee thank you to all of you that have been posting your experiences from your earlier starts, many now on your second cycle. It's really great you are all being so open and supportive, and funny too!!
cheers x

[Guest user]

TC x 4 + H x 12
Cycle 1 – Day 6

Evening Jewels
Phew! Just spent the last couple of hours catching up on posts, wow you’re a prolific lot, great! beats working which I should have been doing this afternoon, so what with that and the tennis, I’ve done b***** all!

Welcome to our new jewels and I hope the girls at the bar today got through their rounds ok.
I’m still paranoid about all things hair and cold cap, so well done all that are persevering. Jean your poem was perfect, the words say so much and Marion you look very chic in your scarf, I have one similar which I’ve worn a couple of times for practice. Well done for being so brave.

TC Cycle 1 day 6, hair still intact but I’m under no illusion it’s going to stay that way. Done all I’ve been told in terms of care including sleeping on a silk pillow which OH ordered for me on line after trapsing around the shops! Or so he said!
Katherine I’m having my PICC line fitted next round, hope it’s the right decision but has to be better than a battered and bruised arm which I have at the moment. Sandra I too have a “bladder problem now, can’t seem to hold it in and have had a couple of accidents in the last few days so also keeping Tenor Lady going! And on the subject of “toilet tales” I seem to have a mix of constipation and the other variety, you don’t want to hear about what I “past” last night….

Other SEs so far, some heartburn and indigestion, joint pain in the mornings and headaches, just flu like symptoms really, but nothing too major or unmanageable, so I guess I’m lucky. Worse thing for me is taste buds all over the place, latest disappointment is strawberries, bought lovely big tray yesterdays in Tesco with some cream to enjoy whilst watching tennis, YUCK…..!!! tasted horrible, bitter and metallic, so OH finished them off. Really annoyed as I love red berries. I’m finding plain food best in terms of taste, anything with garlic or spice (which I love) is a waste of time, so now have some peanut butter and baked beans in the cupboard! I did try a Campari and orange juice last night, that was OK, OH has suggested Guinness, but think that’s just his plan to get me to the pub!

My mouth is also sore at the edges, so thanks Chelle, I’ll try your salt water suggestion. The only other thing I’m not enjoying is my daily bone marrow juice injection Granocyte 34. I’m usually really good a injecting myself which I’ve done before, but this time it makes me feel quite wobbly so OH has been obliging, only one more to do, but I’ll need to get it together for next cycle as he’ll be away……..Nurse!!!!

Deb (Pointy) and Lins I have messaged you separately as we appear to be on the same cocktail, so I’d love to hear how you’re both getting on and Chelle, so glad you’ve escaped hospital, take it easy hun, hope the hair isn’t causing you too much concern…..
Jacket spud and bakes beans calling, yum yum…….

Trish xxx

[Maxie]

Evening Jewels,

Joan, that sicky/spacey feelings horrid isnt it?...glad you felt better today, why couldnt you have any more anti-sickness? Ive been taking as & when or is that supposed to be just for a few days
My profile pics are always messing up, Ive put one up of a robin now as thats what I look like with steroids at mo!!..xx

Vicki you're doing well on s/e front but don't overdo it especially next week. Good luck with work tomorrow!..xx

Ambercatz welcome to group! ...Im craving healthy stuff too (whatever next!)...you'll get lots of support on here from the lovely Jewels!!..xx


Cress love your slutty nail pic!!...agree with the steroids making you hyper, mine finish tomorrow so will prob have a crash!...interesting that youre having the Tax part of chemo first...think you'll be our pioneer on that one!..xx

Chelle we love trying to confuse you but youre too efficient & on the ball!!!.....liking the sound of the body hair-free look, always been a bit ape like in that department so bring it on!!


Just out of interest ( & I know it goes on height & weight etc) but how many syringes of cocktail did you have ( if any of you remember!) I had 4 1/2 syringes of the Epibrucin which I think was loads, about 3 or 4 for the F & C

Mandra!!..aka Sandra :-)..xx

[YB54321]

Yay Cress - glad you staggered back from the bar ok x sounds like your hospital is super cautious giving you anti fungal and anti biotics for the middle week! (Or maybe just saw your nails and thought this one could pick up anything we'd better give her some protection lol) I didn't really notice the steroids until I stopped taking them and then felt tired. Take it easy my lovely x

[YB54321]

my back felt really weird when I'd got out of the bath today when I was putting on body lotion and when I scraped my fingers across it all the tiny white hairs have all dropped out! Never realised my back had any hair before! (but it doesn't now!) my leg hair doesn't seem to be coming back much either. Will have a head to toe Brazilian before long!

[Suffolklady]

Docetaxel x 3 Fec x 3. Cycle one - Day one (yay!)
I'm back from the bar. Apart from the anticipated hunt the vein (can't wait for portacath to be fitted) it went without a hitch. I had to get them to slow down the drip at one point as it really started to sting - but it went through no probs and here I am back at home.
Got steroids - of course
Antibiotics (to be taken in 8 days time)
Anti fungal pills (as above)
Anti sickness pills
7 days of injections
Thank goodness my daughter is now self-appointed minister of drugs! I'll never remember what I'm taking and when!
does anyone else find that Dexamethasone makes them very hyper??
Re dry mouth - lovely lady at Boots recommended their own brand of 'dry mouth spray' - to be used alongside those treatments mentioned above, but it's in a handy purse-sized spray. I've got some just in case but I've been warned to expect problems. There was a link a few pages back for free samples of gelclair on internet, I filled out a very simple form and three tubes arrived today...
So, hope everyone has had a good day - that the fellow barflies are feeling ok - Hugs Cress x
p.s. Slutty nails greatly admired...

[ambercatz]

FEC-T X 8. Cycle 1, Day 7
or is it day 6? Are you counting chemo day as day 1?
Anyway, great reading all your posts today, wasn't sure about a group at first but can see I was silly and it's great to have others to talk to who understand and who can give advice re SE's-I'm sure it gives the nurses a break from endless questions lol.
Feeling OK today. Was tired this morning and layed in bed for ages before I got the energy to get up but once I'd had a shower and something to eat and drink I felt much better. I will learn from this and try to shift myself quicker in future. Did a bit of gardening aka faffing about in a lazy manner but did move a plant that had been bugging me in the wrong place. Picked some roses for indoors too. Also cleared out what I call the tupperware cupboard-does anyone else have one of these cupboards full of containers that the rest of the family just open the door to and throw? I opened it for a little tub and it all collapsed so I have sorted it and it is now all organised-for a while anyway!
I ordered some Glutamide powder that arrived to day and now wish I'd got tablets! It seems a lot of people are finding it useful and there's no contra-indications but you have to dissolve it in water and I don't like the feel of it. I don't like milk so had to do water and it reminds me of milk of magnesia. Still, will persevere and see if it helps as I have a bit of numbness in my middle toe. Supposed to be good for the gut too. If anyone knows of a better way to take it please share.
Besides the cancer and chemo I reckon I must be healthier than I've been for ages with the sensible diet I'm craving. Felt like stuffed tomatoes for tea tonight and last night made a Dhal with chapatis which was enjoyed by all and added to the protein intake.
Am waffling on now so will leave but just wanted everyone to know how much I appreciate this thread and the way everyone is supporting each other-nice to look at the positives for a change.
Hope you all have a good eve x

[YB54321]

Vicki - just take it easy especially in the middle week as I felt great until I didn't x

[Marionblue]

Thanks for the lovely comments after my scalping.
Vicki - I don't kinow about having a good bone structure. With my lop sided chin and big nose, I always think I look like two different jigsaws have got mixed up in the box.

NicJ - You must indeed be very proud of your boys. I should think they are very proud of their mum to, what an amazing amount to collect.

Hope you ladies didn't overdo it at the bar today and are doing well.

Marion
XXX

[artemis17]

FEC-T x6 cycle 1 day 2
hi there,

Fiona glad todays done for you, shame about the cold cap, im the same as Chelle, im hooked up to machine for 4 hours and away i go. Also have a hairnet to sleep in and a silk pillow case so giving it the best chance to survive.
Apart from the spacey hungover feeling im in great condition..mind you only 24 hours so i better not speak too soon. I went for a walk this pm as its sunny here and just did the grass, so now of course im worried that they didnt give me enough cancer killer lol...although the epirubicin was apparently quite a high dose hence the extra cold cap time.

Well done on the fund raising Nicj, you really have made this cancer a silver lining..hats off to you for such dedication and strength.

Going back to work tomorrow, feel a bit of a hypocondriac at the moment, especially as my boyfriend took a couple ays off to look after me, think ill have to fakde it a bit next time ;-).

Marion wow great bone structure, you look like a tiller girl or Helen Mirren type. Definately suits you.

Nice to meet Agnes and Sandra, cant get used to those names though, bless that you both had the same idea for a nick-name.

Joan youre just as busy and i dont have littlies to run after, just a strapping teenage boy to feed lol...

Another lovely picture Cassie, looks like the two of you had a great eve...and is good practice for our girly get together next year!.

Right well off to do the dinner, salt water is a good mouth cleanser, thasnks Chelle, no excuse to ram the lemon sherberts down me now though!!

Catch you all later

xxx

[NicJ]

White or pale gums goes with the territory - treat teeth and gums gently, as mentioned above. Dry mouth will ease off, my fav at moment is raspberry frozen slushe on a stick. Keep a sucking. Can indicate low white blood count.
dont forget to write down your SEs and mention them when you see your teams.
after major meeting with school have been in bed all day now coming round to go to school awards do, Simon is getting most improved learner and top in Drama GCSE - very proud. Also we made the 3 rd local newspaper for the head shave cancer research Fundraiser. Now on £1,700 thanks to all for good wishes etc
maybe Ill just nap for another hour before getting up. Rain torrential.
Nicj xxx

[YB54321]

Mandra & Megnes- are you 2 just trying to mess up my list!

Just had a bath and was expecting masses of hair to come out but it wasn't too bad. I ordered another wig last night as I'm not sure I like the one I have (well I have 2 but 1 was only cheap).

Marion - now know why you are Marionblue - that scarf makes your eyes look amazing blue! You look fab x

Joan - slow down Wonder Woman!! Hope you have a good day x

Paula - welcome to the Jewels - as others have said Gelclair and salt water work well x

Right .......nails need buffing - really helping strengthen them up x

[fimbo123]

AC x 4, Docetaxel x 4, AC cycle 2 day 2

Hi Sandra, nice to be properly introduced! - but why do you look like Jackiebee?

Marion, very glam scarf. I too am wearing wigs out and scarfs at home, although my boys prefer me in my wig, so I'm wearing it a bit more often than is really comfortable! Another compassionate OH - I was so keen to avoid anyone else having to do it too, but I know mine found the experience upsetting. When I got my hair cut to a short bob, acquaintances who didn't know about the BC said they like my hair. With the wig, nobody has said a word (except people who know). I think it looks so groomed they all know it couldn't possibly be my hair!

Vicki - lawnmowing? How?

Felt pretty awful last night although I wasn't sick, just really nauseous, headachey and incredibly spaced out. Worse than cycle 1, wonder if it was partly in my mind because they told me I couldn't have any more anti-sickness last night. Went to bed shortly after 9, good sleep apart from lots of bathroom visits (4 litres of water yesterday) and felt much better this morning. School run with my dad for moral support on the wig front, coffee morning with friends, youngest son's sports day this afternoon. As good a day as it gets during all this. I expect I might crash at 9pm again.

Spot on with my next date at the bar Chelle.

Paula, I haven't had any white gums either. I too rinse with salt water 3 times a day.

I hope all ladies who have been at the bar yesterday or today got on ok. Hope to hear from you soon.

Cazzer, how did your onc appointment go yesterday?

[Maxie]

You look really glam with scarf Marion, must have been a relief in a way to get rid of rest of hair?...like the matching necklace too..really nice..:-)

Hope you get the Gelclair Paula x

Sorry folks for me posting bits all the time today, I blame the steroids!!..xx

[Marionblue]

Hi Everyone

Fiona - Glad your back safe and sound. It must be sooo disappointing to be losing your hair after putting yourself through the CC.

Wore my wig out yesterday and when I took it of there was a large bald patch on the top. I had decided that when I wasn't happy going outside in my pixie cut it would be time for the hair to go. I would have been to embarrased to stand on the doorstep with my scalp beaming out into space so it was time for the hair to go. I held on to it for 5 weeks so not too bad. My OH clippered me this morning. He said it was the most awful thing he had ever had to do which made me feel rotten, but I told him how great he was for saving me having to go to the hairdressers. And I really am grateful. I was born with curls so my hair has never been this short. I look like I should be in a police line-up. Have updated my photo, wearing a scarf my ED bought me. I think I'll keep wiggy for going out and wear scarves at home.

Welcome Paula. I don't know about white gums. I haven't had that (yet)

Chelle - Hope you are keeping out of trouble today.

Anyone else out there masquerading under the name of their pets?

Very wet day in north Wales so stuck in doors today. Catch up later.

Marion
XXX

[Paula341]

Thanks Maxie, I just phoned the doctor there and they will phone back so I will ask for the gelclair! xx

[Maxie]

Haha Chelle ...just keeping you on your toes!!....Meggy has told us her real name too...Agnes.....so least its not just me;-)..xx

[Maxie]

Welcome to Paula, sorry your post only just appeared!... Im not quite up to the mouth stage yet (only day 3) but some of the girls have mentioned salt water mouthwash & Gelclair mouthwash which you can get on prescription.
Sure more Jewels will reply to you soon!..xx

[YB54321]

Aw Fiona - glad you're back in 1 piece! The cold cap I'm using isn't changed throughout the session as its hooked up to a machine that keeps it frozen. At least you tried x

Maxie - what are you trying to do to my chemo head changing your name now! I'll prob end up calling you Mandra!

[Maxie]

Chelle on the ball as usual!!!....hope you've not ventured out of your area today so far?!..:-)

[Maxie]

Fiona, Glad to hear you got back from the bar quite quickly, especially with CC time too!....I was there for 3 hours ( but they couldnt find a vein for ages!!)
Hope the Emend works for you this time, I think if I hadn't had it would def have been v sick by nightime.....fingers crossed & confident you'll feel fine ..xx

[YB54321]

• 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)
• TaylorJ - 4/7 (cycle 2)
• ethel1 - Elizabeth 8/7 (cycle 2)
• Esther_1986 - Est 8/7 (cycle 2)
• Meggy-moo - Agnes 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)
• Flip Flop - Faye 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 - Sandra 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)
• Suffolklady - Cress 18/7 (cycle 2)
• Jackiebee - Jackie 18/7 cycle 2)
• Satsuma - Fi 18/7 (cycle 2)
• Glasgow Girl - Fiona 18/7 (cycle 3)

[Paula341]

Hey all,

I have been secreatly stalking you june jewels girls for a few days now (hope you dont mind). I recently started chemo on 21st June and just looking for some insight of what other people are expereincing. This morning i woke up and my gums are white...i have constant dry mouth too no matter how much water i drink...does anyone have any ideas on what i can do to help it? xx

[Glasgow_Girl]

FEC-T, 3 of each. FEC cycle 2, Day 1

Hi everyone
Thanks for all the messsages sending me good vibes for today. At the bar from 9.30 until noon. Feeling really woozy and tired, had some lunch, on the sofa with my blanket and the tennis.
As well as my Emend, got some extra anti-sickness stuff through my canula before the chemo. Nurse said I shoud be fine this time, given all the ant-sickness stuff I've got. If not, she said, don't know what else to do with you!!!
Tried cold cap again, went through 3 today - each time there was so much hair inside I left looking so much worse, really bad bald patch getting much bigger on top of my head and fringe vey sparse. So, I think it's not really working for me. Give it a few more days, put OH on standby with the clippers. I couldn't go outside how I look now - wig good to go and had another Annabandana delivery yesterday.

Will post properly later, if I feel ok, to respond to all the great posts I've read.

Hugs to everyone,
Fiona
xx

PS - Chelle, booked in for 3 weeks today, 18th July, for 3rd cycle

[Satsuma]

Well it's buzzing at the bar. Cocktail going down nicely so far! Lorazapam helped earlier! Lot's of faffing around with cap and then finding a vein. Managed at last but getting picc before next cycle so that should help. Trying to relax into in now 🙂
x

[Maxie]

Haha another doggie nickname!!....love the name Agnes its a family name in my family. Didnt really want to reveal my name at first in case of snoopers i.e. friends & family maybe being horrified by all my hypochondria & s/e's but now don't really care & feel weird being called same name as my dog....lovely tho he is!!..xx

Another one with Gushing syndrome!....I swear if it wasnt for this site Id be on the phone to BCN's every 5 mins!!

Catch you all later xx

[Meggy_moo]

Hi jewels,sorry that I missed the girls going to the bar this morning.I plugged iPad in to charge overnight and didn't switch it on doh. Any way girls hope they are being gentle with you.
Sandra same thing happened to me yesterday felt really strange in the downstairs department ,my daughter was in the shower so I had to grab a bucket ,it was like a dam had burst.Will watch for this on 2nd cycle don't want it to happen outside lol.
Will also reveal myself .My name is Agnes.Meggy is my dogs nickname lol
Take care Jewels Agnes xx

[Maxie]

Haha Nic, I just knew you'd have had that s/e as queen of most of them!...thanks thats reassuring that Im not alone!!..xx


Cassie..lovely photo, you look v glam sipping your cocktail!....I too have gone off alcohol & cakes & choc too (all my fave things!)
Taste may change soon I suppose but at least may lose a bit of weight...:-)

xx

[cassie1]

FEC CYCLE 2 DAY 3
Good luck and welcome to the coctail lounge Cress, Katherine, Jackie, Fi & Fiona no pushing in.
I have changed my profile pic to show me enjoying a real coctail with my daughter,,I cant drink now if makes me feel sick so my husband is pleased as Im a cheap date.
My side affects are mostly I cant sleep I just lie there which makes me tierd for the rest of the day. Not sure if its the steriods that are causing this.
Nicj and Becky you are a super mum doing what you do whilst we are dealing with side affects etc.. Im lucky that my children are a lot older and can more or less look after themselves which gives me time to rest.

[NicJ]

Sandra yes that's one of my side effects too!

[Maxie]

Fec/T CYCLE 1 day 3

Morning ladies,

lots to catch up on, first of all good luck to all of you on the cocktails today! 🙂

Chelle so glad you got out eventually, what a nightmare day for you!... surprised your temp didnt shoot up again with all the aggro!!
Can't believe you've had time to update the list, you're so organised!....spot on with my next bar visit, if all goes to plan!..xx

So sorry for the three of you that have lost pets in the last days/weeks....so sad for you when going through all this as well....life can be so harsh at times.....hugs to you all...xx

Becky great to hear from you, wow dont know how you find time for everything & then write great long post too!! Enjoy your camping trip at weekend!!..xx

Nic J ....brave of you to not have your 2nd dose reduced, I can see where you're coming from tho....will be a special night for you withyour boys & mum there too...take plenty of tissues & enjoy...xx

Chemo brain has kicked in already & I want to post back to so many more of you but cant scroll back as will lose my post!... need to make notes as I go along!

Liking all the suggestions for t-shirts, be great to get names on the back...PAST is great too. Thought of another one we could add maybe somewhere "Diamonds are a girls best friend"!!....as I feel like we ARE all friends (& jewels!)

Felt a lot better yesterday. YD popped up from London for the afternoon, I ended up doing a pamper session on her ( er shouldnt that of been other way round?!) anyway was lovely. Managed to eat a normal tea but no cakes or anything,(yuk!)just nibbling ginger biscuits .

Felt a bit heartburney before bed but had taken the Omeprozole in the morn, may take it a bit later today. We kicked OH out of bed & YD slept with me which was cute (she's26!!) However this morning she informed me that I snored really loudly all night (lorazepam!) so not impressed!
Took 3rd Emend this morn plus one other anti- sickness that you take at same time, plus steroids, now feel a bit queasy as theyre all kicking in to do their bit.....have to self inject the WBC booster at 1pm....surprised myself that I did this ok yesterday.

Something a bit weird happened yesterday tho, hope not TMI for those of you feeling queasy, but was lying on bed reading when suddenly thought.. Ooh think I need a wee (but not that urgently) went to loo & there had been a deluge akin to waters breaking all through to leggings!!!....what was that all about??....convinced not wee....may need to stock up on Tena lady at this rate!!...anyone else had similar, or am I incontinent now too?....may have to bring a commode to York with me next year! 🙂



Where is Martha??...we need a tracking device on her!!


Have a lovely day Jewels & may all your s/e's be small


p.s dont know why I havent revealed my proper name yet, its Sandra (Maxie is my dogs nickname!)

so catch you all later

Sandra xx

[Guest user]

Morning wonderful jewels,
FEC x 6 cycle 2 day 8 and feeling a lot better. Been to see the horses this morning and had a walk. Hungry for the first time in a week too.

Got a good lump on my forehead following my meeting with the wash hand basin ! Husband has removed the lock on the bathroom door !! In the grand scheme of things the second cycle has been easier than the first, purely based on the availability of Emend. It took me 10 days to pick up on the first cycle and this time 8 days.
Best wishes to all at the bar today. xx

[Guest user]

Ok, heels on, lippy on, inappropriately revealing dress on- it must be time for a cocktail. Thanks for the good wishes. A few of us at the bar today! See you on the other side, ladies!

[YB54321]

Vicki - boil some water and add a teaspoon of salt and let it cool then rinse with it. Only thing they kept my mouth semi normal. Did it about 4 times a day

[artemis17]

Hey chelle glad to have you admin/ocd tendency working for us, think it gives us all a sense of community knowing when we all have our round to get in loll..

Started getting a horrible taste in my mouth ans my tongue is looking coated. Trying to clean it with a baby size soft toothbrush doesn't help...

Least it's sunny here so washing on and mowing the grass later I think.

Take care all jewells.

Xx

[YB54321]

Debs - course you are welcome on our get together x

Cress - love the t-shirt idea x

all - cocktail list had a lot of dates in the past (and I'm OCD about plans!) so all past dates have been moved on by 3 weeks. I know Everyone's dates don't stay exactly to plan (and with chemo head I've probably messed them all up anyway) but please check and let me know if anything needs changing. (Am sure one of the Jewels is having chemo weekly but can't remember who?)

OH has had to go to Birmingham for work today so I've been instructed not to move further than the living room and kitchen (oh bathroom permitted as well) or I'm in trouble

[Guest user]

Fab thank you! Bring on 2014 and lets kick the ass of this rubbish year!!!!!!
Dorothy is a fab name! lots of connotations with a cat though, dots, diddles, dotty diddles...............lol
xx

[Suffolklady]

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

[Guest user]

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

[Guest user]

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

[artemis17]

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

[Suffolklady]

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

[artemis17]

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

[YB54321]

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

[YB54321]

• 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)

[Penny47]

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.

[Guest user]

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

[NicJ]

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.

[BeckyJoan]

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! 🙂

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^th 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 😞 and Fi (Satsuma) your dog 😞 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! 🙂

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! 🙂 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

[Suffolklady]

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.