Anyone from East Kilbride/Glasgow area?

HI HELEN…

ITS NOT CRAP ADVICE ABOUT CORSODYL…JUST DILUTE IT WITH WATER.I WORK IN A UNIT WITH PATIENTS WHO HAVE HEAD AND NECK CANCER AND THEY ALL USE THAT.IN ADDITION THE ONCOLOGY DOCS GIVE ME CORSODYL TOO.
IF U GET A SORE THROAT GET DIFFLAM MOUTHWASH OR SPRAY.FOR A DRY MOUTH BIOTENE ORAL BALANCE GEL…ITS SALIVA REPLACEMENT.

SOUNDS AS IF U HAVE BEEN SUPERMUM THIS WEEK…DON’T KNOW HOW U DO IT.
LOVE THE NAMES OF UR CHILDREN.U WILL B FINE WITH UR MUGA SCAN 2MORROW…JUST RELAX AND GET IT OUT THE WAY.HOPE UR COLD GOES AWAY…SAYING THAT I HAD THE FLU WHEN I STARTED THE CHEMO…AND LOOK NOW I AM NEARLY FINISHED WITH IT.TRY SOME MANUKA HONEY…TASTES VILE…I AM NOT SWEET TOOTHED THOUGH BUT ALLEGEDLY BOOSTS IMMUNE SYSTEM.

GUYS DO U WANT 2 MAKE LUNCH SOMETIME AFTER EASTER OR WHAT?NEED 2 WORK OUT FOLKS APPOINTMENTS AND STUFF.
SHARON…KEEP UR CHIN UP…U R A SOLDIER…SO THE FIGHT GOES ON…RIGHT!!!

HAD A NICE AFTERNOON 2DAY WITH PEOPLE VISITING.LUNCH WAS A BIT OF AN ANTI-CLIMAX THOUGH I CANNOT BLOODY TASTE MY FOOD…LOOKED HELL OF A GOOD THOUGH…LASHINGS AND LASHINGS OF GOOD RED WINE IN THE LASAGNE.

JUST HAD MY BATH WITH LOVELY BATH BOMBS …V.NICE.

TAKE CARE EVERYBODY
PXXX

Thank you for your kind words Helen, I know what you mean. Feel better already.

Helen I’ve been using Corsodyl all along, it nips but as Pauline said just dilute it, difflam is also good for when your mouth is bad.

Pauline I’m the same with food, can’t taste a thing, everthing looks so good then when you put it in your mouth, nothing!!!

Saw Dr Yosef today, my Oncologist, he’s really happy with my progress so I just have to wait till Wed now, he said I’ll def find out then when I get my operation. So I’m felling bit better now.

Big hugs to all
Sharon xxxxxx

Thank you all for such a welcome to this little group. You all seem so young to be going through this horrible thing. Just a wee bit about myself. I live in Lindsayfield and moved here 2 years ago to be near my daughter. We both live in the same road, which is just great. I am a gran (young!!) of 2. Daughter has a baby, Jessica who’s 6months and my son has a wee boy, 3 on sunday. I see some of you were talking about Maggies. I sometimes go to the one in Glasgow and found it a great support. Done some of the courses or just gone for a chat. Coping fine with the Xeloda - the Taxotere that I was on is the killer. At least I can taste food again. Glad to read that you enjoy a get together and a glass (or 2) of wine. Definately girls after my own heart.

Hi Again

I’m really glad my advice about Corsodyl wasn’t totally useless! – the dentist advised me to use was Corsodyl Daily, which apparently is new and a lot weaker than the normal Corsodyl, so I’ll need to head back down to Boots to get some along with some biotene oral balance gel. I got some Difflam yesterday and also some Duraphat toothpaste, which is 2800ppm fluoride. I think I’m going to have to write a list so I don’t forget what its all for! Anyway thanks for all your advice it’s really great, I’m so glad I found you all!

Sharon I’m really glad you’re feeling a wee bit brighter and your appointment went well today. I now know to refer to my oncology doctor as an oncologist - I’m still learning!

Pauline – did you really start your chemo when you had flu? I just assumed that if I wasn’t 100% they wouldn’t start it. I gatecrashed Seren’s doctors appointment earlier and said I thought I was coming down with a cold, so she checked my throat and glands and said everything was OK and to take Vitamin C over the weekend. Poor Seren has a chest infection again so is back on antibiotics, she started nursery at the beginning of Feb, when I went back to work after maternity leave, so I think it’s just all the nursery germs she’s picking up. I was only back for 9 days when all this kicked off. Thanks for commenting about my kids names; Seren is Welsh for ‘Star’, it’s quite popular in Wales, although no-one has heard of it here (I’m Welsh). I’m glad you had a lovely day with your friends and mum. My mum is coming to stay next week to help us out with the kids, just in case I’m feeling rough.

I’m booked on the ‘looking good feeling great’ session at the Maggies centre on the 6th April. I’m just hoping I’ll feel up to travelling through there, as it’ll be great to go on it before or just as my hair is no more - I still can’t believe its going to happen!.

Take care all.

Helen

Just a quick (positive) post. Went for my marker scan and the tumour has shrunk from 4X4 cm to 14mm. Still stuggeling with the Upper Resp , breathing is a bit gurging. I am seeing the Asthma Nurse tomorrow to aee if they can give preventative treatment.

Next cheno due next Fri, bloods permitting. Been sooooo poorly this week hope the levels are up to it!

Anyway, if if I didn’t feel soo feeble,i woudl be pleased that - at last - there seems to have been a wee bit of lolliopos!

Annie - wit lots of xxxx

HI GUYS…

HOPE U R ALL IN THE LAND OF NOD…WOKE UP AT 3AM AND CANT GET BACK 2 SLEEP AT THE MO.

HELEN…YES I DID HAVE THE FLU WHEN I STARTED.NO FLU JABS FOR ME EITHER.I WAS PRETTY RUN DOWN…JUST PUT IT DOWN TO DOING 2 WORKING 2 HARD.
DID’NT KNOW ABOUT THE NEW CORSODYL…DON’T RUN OUT AND BUY ALL THE STUFF I HAVE MENTIONED…IT WILL COST U A FORTUNE.THE ONC DOCS WILL PRESCRIBE U DRUGS AND LOTION/POTIONS GET FROM CHEMO NURSES…BIOTENE GEL,ACQUEOUS CREAM FOR DRY SKIN,.
WHAT KIND OF CHEMO R U GETTING?I HAVE HAD 3 FEC AND 2 TAXOTERE SO FAR.

ANNIE …GLAD UR TUMOUR HAS SHRUNK…HOPE U GET THAT RESP PROB SORTED OUT.

ADIOUS AMIGOES
XXXX

HI eveyone

Sorry noy been on in a couple of days had a nightmare, boiler broke down on monday so it was freezing… got it fixed now, them i broke my key in my door so had to get a lock smit… Had jessica’s 3rd birthday on wed, had all the familly round having a party on sat at brewsters for all her little friends. whent to beatson for bloods yesterday and i am going back today foe my first cmf hope i will be okay …

need to dash got to drop jess of at nursey today it’s her first day… she should be ok because her big sister is there as well soo fingers crossed she doesnt hang on to my leg…

Big hugs to everyone

lol jo

ps Welcome cammie

Hi Everyone,

Hi Annie, Glad to hear about your tumor… long may it continue to shrink!!! Not good about feeling rough, but just think, everything is heading in the right direction.

I had a lovely time at the Maggie centre Yesterday, what a really nice place… I could see me visiting there often…I spoke to Joan…who was so helpful and informative. I’m popping there next week to get some financial advice.

Pauline - got my letter in from beatson today, I’m seeing Dr Alhasso in his outpatient clinic at 10.15am Tuesday. Don’t know if that is anywhere near area 2? And my chemo is scheduled for the following Tuseday (7th) area 1…I’m so gonna get lost!!!

Gosh Jo, you certainly had a full on week, hope everything went ok today with cmf…xx

Sorry to hear Helen your wee one isn’t well at the mo… there’s a few colds flying round here and I must admit I’m getting a bit paranoid about illness… What Maggie centre are you going to?

Hope you’re feeling a bit better Sharon, you’ve been doing so well, keep thinking positive thoughts, Big hugs xxxx

Hope everybody else is doing good, Peckers up girls!!!

LoL ‘N’ (((((Hugs)))))

Fiona xxxx

MORNING GIRLS…

LOOKS LIKE A NICE MORNING…HOPE U R ALL OK.

FIONA…I WILL B THE ONE CARRYING A DAFFODIL ON TUESDAY AT THE BEATSON…HEHE.
IS SOMEBODY GOING UP WITH U?
MY APPOINTMENT IS AT 10AM TUES…I AM GETTING PATIENT TRANSPORT UP .
WILL LOOK OUT FOR U.I HAVE A HICKMAN LINE IN SO I DON’T HAVE 2 WAIT AROUND FOR AGES IN THE BLOOD QUE.APPOINTMENTS R NEVER ON TIME UP THERE…SO I WILL BE PROBABLY BE HANGING AROUND.
I WILL B WEARING BLACK JEANS,BLACK LONG BOOTS AND A SHORT GREEN JACKET AND A LARGE BLACK BAG.HEY MIGHT JUST GET A PLACARD WITH MY NAME ON IT.
I WILL LOOK OUT FOR U AND SHOW U WERE THE CHEMO SUITE IS.

HOPE 2 CU
OVER AND OUT
PXXX

hi eveyone

what a nightmare i had at the beatson yesterday… appointment was at 1.30pm so i dropped the kids off at nursery thinking i will have loads of time to get back foe 3.30pm… Didnt get taken until 3.45 they had a problem with pharmacy my mum was gettin so annoyed at them having to wait 2hrs is just terrible!!! had to get my dad to leave his work to go and get the girls… So i didnt get out until about 5pm last night my vain was bad so it kept going slow and they kept on having to stop just my luck…

didn’t feel too good last night whent to bed early and woke up this morning at 6.45am thrown up feel like crap stopped being sick now but still feeling a bit seedy hope it will pass soon. got jessica’s party at 4.30pm…

Hope you all have a good weekend , oh it’s soo cold out side today think it’s to snow …

lol jo xxx

big hugsxx

Hi all

Thanks all for asking if i’m feeling better, I am but now nervous about Wed and the OP. I know I shouldn’t be but I am.

Jo - sorry to hear your not feeling too good, I was delayed by pharmacy aswell with my last chemo, they made me wait 2hrs!! hope your still taking anti-sickness medication.

Anyone got any advice what to do about watery eyes, now I have very few eyelashes left my eyes are constantly watering, it’s such a pain, it’s not just when I go outside, it’s sitting in house also, can’t see properly. My taste buds have totally gone now also!!

Good news Annie! Fiona and Helen, maggies glasgow has such a nice atmosphere, I went to one in wishaw and didn’t like it.
Cammie, Tracy, Pauline, Angela hope your all well.

I want my energy back now, walked from my flat to new pub that’s opened up just down road from me, I didn’t think I was going to make it, my legs are in agony now, I had to get taxi back home.
Just showed me how much the chemo has taken out of me!!!

I’m out next Sat with friends for my birthday so I hope I won’t be as bad as that again. Maybe I should start doing a wee bit each day, after all I’ve signed up for Race for life, either that I’ll just sit in a buggy and get pushed around Glasgow Green HEEHEE

Have a good weekend everyone

Big Hugs Sharon xxxxx

Hi girls

Never logged on at this time before but I was really bored, fed up looking at eye lids again!!!
I could really do with something to take my mind off things, it’s sooo hard being on your own, (this hasn’t been on my mind for at least past 4 years but) I sooo miss cuddling up to someone, know it will happen in time but I still can’t stop thinking bout it. The most important thing just now is ‘ME’, but I must confess anytime I go anywhere I can’t stopp oogaling men, I wasn’t like this before I found out I had cancer it’s only now I’ve finnished chemo, I have felt like this !!!
Maybe I’m weired? Maybe im not, Zolidex sucks!

I’m going back to bed to try dream again

Massive hugs, me xxxxxxxxxxxxxx

Good morning/ Afternoon? (I hate when the clocks change!)

Down at my Dad’s in Ayr. Sun is shining but it’s bitterly cold. Got all my hair cut off yesterday (about 10inches) so it’s a nice little bob now! Maria who trained me was very upset when I told her and I got pretty emotional myself. Being a hairdresser I know the importance of hair and although I know it’ll all grow back I feel completely exposed!! She had offered to style my wig when I get it. I have really fine hair anyway and would look daft with too much hair.

Pauline - will look out for you on Tues. Just look for lost person with short blonde bob!! I’ll be with a friend called Tina. X

Jo- hope you’re feeling a bit better today. How did the party go? X

Sharon - make sure you get plenty of rest and don’t overdo it. At least you’ve not lost your sense of humour. Just think, when all this is over you can go out and find youself a bit hunk of a guy to cuddle up to!!! Lot of time to
make up for!!! LOL X

Well hope everybody else is keeping ok. X

Hugs xxxxxxxx F xxxx

Hiya Everyone

Annie here. I have had 2 infections last week and feel as weak as a kitten.

Totally get where you’re coming from Sharon. I can take pain (buhlieve me!!!) but this felling of … feebleness … is totally alien to me.

As is my thumping heart when I exert myself. My heart was like an ox at echocardiograph (that’s why they could start chemo a week after the lymph surgery) One of the components of FEC is cardiotoxic and I know that it’s temporary but it’s bloody crap! I am only getting 4 courses (but strong) - God knows how I’d manage on months and months of this. I wonder, since the shrinkage was so dramatic, so you think they will still give me all 4 courses? Radiologist said that one more course and they would not have been able to find hthe original site.

I just want this to be ove with, get the op and start to feel like I am ‘me’.

I know that I was only DX 12th Jan, but I feel I can hardly remember a time before that.

I am due next FEC on Friday, bloods permitting. I have been so poorly (now on antibiotics) that I hope they can do it!

Have now lost most of my lashes too. They were maybe half an inch long at their longest but strong, wiry. Now the ones left are weak and wobbly, so my eyes too are watery and my nose is red and raw from the cold and I have no voice from the cough. At lease the ‘stir crazy’ feeling has gone, too pooped to want to go out. Can’t see well enough to read the amazing pile of books that I bought and have been given in preparation of this time of ‘purdah’. Can’t taste anything much and can’t smell anything.

Which is better than last week when all I could smell were farts and smelly socks - in the open air! Chemo is a weird wee b******d, eh?

Can’t wait to be well enough to go back to Maggie’s Centre, due to be there on 8/4 to get my DLA form filled in. At least I won’t have to exagerrate my condition! I was dreading that as I am so honest I couldn’t lie to save me from the gallows!

Please god, let this infection lift soon. You can manage chemo.

What a moaning wee bisom eh? Not usually. oh going to try to post a wee poem that made me laugh (well it did pre all of this)

Here goes kittens

The Boob Poem

For years and years they told me,
Be careful of your breasts.
Don’t ever squeeze or bruise them.
And give them monthly tests.

So I heeded all their warnings,
And protected them by law.
I guarded them most carefully,
And I always wore my bra.

After 30 years of gentle care,
My gyno, Dr. Pruitt,
Said I should get a Mammogram.
“O.K,” I said, “let’s do it.”

“Stand up here real close” she said,
(She got my boob in line),
And tell me if it hurts," she said,
“Ah yes! Right there, that’s fine.”

She stepped upon a pedal,
I could not believe my eyes,
A plastic plate came slamming down,
My hooter’s in a vise!

My skin was stretched and mangled,
From underneath my chin.
My poor boob was being squashed,
To Swedish Pancake thin.

Excruciating pain I felt,
Within it’s vise-like grip.
A prisoner in this vicious thing,
My poor defenseless tit!

“Take a deep breath” she said to me,
Who does she think she’s kidding?!?
My chest is mashed in her machine,
And woozy I am getting.

“There, that’s good,” I heard her say,
(The room was slowly swaying.)
"Now, let’s just do the other one.
‘Have mercy,’, I was praying.

Next time that they make me do this,
I will request a blindfold.
I have no wish to see again,
My knockers getting steamrolled.

If I had no problem when I came in,
I surely have one now.
If there had been a cyst in there,
It would have gone “ker-pow!”

This machine was created by a man,
Of this, I have no doubt.
I’d like to stick his balls in there,
And see how THEY come out.

He he

Thanks for letting me vent, I don’t ususally feel soory for myself …

Annie W xx

Hi Everyone

Sorry I haven’t been around for a few days, but I’m having a huge confidence crisis at the prospect of losing my hair. I just can’t imagine looking in the mirror and it not being there and I don’t even know how to tie a bloody scarf round my head – this is all so crap.
What type of scarves does everyone wear? If I wear a long scarf, as opposed to a headscarf what is the best length? and how did you learn how to tie a scarf ? I just don’t want to look silly when I go out.
Sorry to moan and not to ask about anyone else, but I’m just having a huge panic as I start my Chemo tomorrow (Epi-CMF)and I’m just really scared.

Thanks

Helen

Hi girls

Annie, the poem was great, and your allowed to moan to us. You may not get chemo if your still on anti-biotics. I had chest infection and got anti-biotics and had to be delayed for a week.

Helen, they do a course at maggies called Head Strong which shows you how to tie scarves and you can buy scarves there. I have bought a few scarves from primark, which I put on my head then just tie in a knot, they are scraves your supposed to put round your neck so are quite long, goes way down my back sometimes get caught in trousers, I think they look quite trendy, I have a plain black one I wear quite alot. Also if it’s a handkie type scarve i.e square it should be 10cm x 10cm, I have also bought some hats that I wear when it’s cold outside.
I know it’s alot to think about but you will get there and do remember your hair will grow back.

Take care for now
Big hugs
Sharon xxxxxx

Hi Sharon

Thanks for your advice – I don’t feel quite as crap now!. I have bought a few ‘round your neck’ scarves, but was struggling to tie them and wasn’t sure if I should wear them long or fold them in half first, so I just assumed that they were the wrong thing and I felt a bit stupid for buying them.

I ordered a black bandana yesterday and a head cover to wear under a hat, as I’ve already started wearing one to school.

I can’t believe anyone at the hospital hasn’t mentioned the Maggies centre.

Thanks again Sharon, I really appreciate your advice as I’m struggling a bit at the moment.

Helen

Hi girls - sorry not on at weekend. Busy and sometimes broadband connection not good and get mad at it. Just lost everything I typed in . Saw your comments about head scarves. I got a good booklet on Hair Loss from Breast Cancer Care. I also went to The Haven in Blantyre where someone there can show you how to tie scarves and they also sell cotton ones quite cheap… Make sure your get cotton ones as silky ones slide about and also make your head hot. It’s such a horrible thought to lose your hair but it is amazing how quickly you get used to it. I find that if I can wear a bit makeup a wig or scarf seems to look better - some days I feel too bad to even think about makeup. Helen - hope all goes well with your chemo tomorrow. Do you have to stay in hospital or do you get home. See 1 or 2 of you are with Dr Yosef - my oncologist too.
Keep smiling girls - not always easy when we feel like crap but it doesn’t last.
Sorry - forgot to tell you all my name - Sheila

Hi all,

I have put for you below the link to BCC Headstrong area of the website. Hope it helps.

breastcancercare.org.uk/server/show/nav.778

Kind regards,
Jo, Facilitator

EVENING EVERYBODY…

BEEN OUT AND ABOUT THE LAST COUPLE OF DAYS…WENT 2 HELENSBURGH AND LARGS…IT WAS GREAT!!!
SHARON…WED 1RST IS NEARLY HERE…SO HOPEFULLY U WILL GET MORE OF AN IDEA AS 2 WHATS GOING ON.I WAS UP AT THE RAH 2DAY 2 C SURGEON AGAIN.DEF LOOKING AT BILATERAL MX AND FUTURE OVARY REMOVAL.
NOT B GOING FOR ANY MUSCLE FLAP SO WILL EITHER HAVE TISSUE EXPANDERS OR 2 PROTHESIS.NEED 2 TALK 2 PLASTICS AT CANNIESBURN B4 I MAKE FINAL DECISION.
HOPE U GET ON OK ON WED.SORRY 2 HEAR U STLL HAVE SLEEPING PROBS.WHEN R U COMING OFF ZOLIDEX?
STILL CANNOT TASTE ANYTHING…ITS LIKE BEING ON WEIGHTWATCHERS EATING THAT RYVITA MUCK.AT LEAST THE FOOD LOOKS GOOD.
WHAT PLANS HAVE U GOT ON UR WEE BREAK?HOPE U HAVE A NICE TIME ON SAT ON UR BIRTHDAY…I AM SURE U WILL.

FIONA…HOPE U R OK,WILL LOOK OUT FOR U 2MORROW.JUST STAY CHILLED…I KNOW ITS HARD THOUGH.

ANNIE…YA MAD WOMAN…U REALLY R A CHARACTER.I LOOOOOVVVVEE THE POEM…COULD NOT STOP LAUGHING FOR AGES.
HOPE UR INFECTIONS R CLEARING UP…BEEN A BIT OF A BUMMER…BUT STAY STRONG U R GETTING THERE.

HELEN…I REALLY FEEL FOR U.IT IS SCARY THINKING ABOUT WHAT U R GOING 2 GO THROUGH AND ITS FEAR OF THE UNKNOWN THATS THE BIGGEST PAIN IN THE ASS.IS SOMEBODY GOING WITH U 2 MORROW? DON’T B A HERO…ASK FOR HELP. THE CHEMO NURSES WILL ANSWER ANY QUESTIONS U HAVE GOT AND SHOULD REASSURE U 2 ABOUT STUFF.
MAKE SURE U HAVE SOMETHING 2 EAT B4 U GO…WILL B THINKING OF U.

JO…HOW YA DOING NOW…U REALLY HAD A ROUGH TIME OF IT THERE.

SHEILA…HOW R U DOING…WHAT R UR PLANS FOR EASTER?

ANGELA AND TRACY…CU HAVE NOT POSTED FOR A BIT HOPE U R OK.

TAKE CARE EVERYONE…

BIG HUGS 2 ALL

PX