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starting my pink road of cemo, 15th nov

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Re: starting my pink road of cemo, 15th nov

Ang...it's me who's taking milk thistle (3 times 250g per day is recommended...great, 300g tabs!) and I started the night before chemo and took them for three days. Also 75mg of aspirin per day when I remember...seems it will help with the microclots forming in the brain from the cell death caused by chemo which may contribute to chemo-brain.
Also avoided getting bunged up with plenty prune juice, natural apricots, and those conc fruit cubes they sell in Boots.

Making sure I get my curry fixes in week three. After the incident with the lightly spiced Japanese cracker early week two...resulting in sticking my tongue in cold water for about ten minutes, I am aware that my usual thresholds are squiffy (as was alcohol at 1/4 glass second half of week one). Beer was gross for almost ten days :(.

Round two Tuesday. ((HUGS)) all round xx

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Re: starting my pink road of cemo, 15th nov

hi girls

Hope everyone is doing o.k
Just to let you know I am thinking of you all

Mel xx

Jo_BCC
Member

Re: starting my pink road of cemo, 15th nov

Hi ladies,

I have put for you below the link to BCC's publication 'Understanding your pathology report' which those of you who have obtained your path reports may find helpful.

http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...

Also if there is something which you still don't full understand then the nurses on the helpline will be only too happy to talk to you.

Hope it helps.
Jo, Facilitator

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Re: starting my pink road of cemo, 15th nov

Deb,

I don't think its common practice to get a copy of the path report, but i did however, get a copy of the oncs letter to my docs with all the details in, after he had report the path report. He offered to CC me on it and accepted. But again, i hear this isn't common practice as it may cause more worry for some patients...

I really should start to wrap some presents today, but have woken up with a couple of uclers brewing in my mouth (AHHHHHHH) on the joys.

Happy sundays pinkies

Sarah X

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Re: starting my pink road of cemo, 15th nov

Good morning girls
up with the larks, it would seem. Have been keeping off the BCC website as I had a job to finish on the computer and I knew that if I kept on checking on the thread it would take me three times as long to finish it! I am amzed at my self control, considering I am a BCC addict.

BLIMEY! It took me AGES to catch up! I have decided a new tactic. I will have a notepad and pen at the ready to jot down comments from other pinkies as at the moment I can't keep track of who has said what! If I am an addict I may as well be professional at it! lol

Welcome to pinchypants though! I remember the unusual name!

Well, first of all I am thrilled that there are other ladies out there delighted with their W word. I love mine. Used to just wear it outside but I have started wearing it inside as well (not all the time, mind). I am so used to it. It's a lovely cut and the colour is amazing. Everybody tells me how good and younger I look in it. Mind you, I am becoming paranoid about my OWN hair now. Was it THAT rubbish? 😞

I empathize with LIF and Minnie about the hot flushes in bed caused by the buff. I have the same problem. If I go to bed without it my head feels really cold but if I put it on I wake up during the night absolutely lathered and have to take the blooming thing off! I put my head buff on, I take my head buff off. On off on off...it's like the hokey cokey. Damn! I don't know what to do for the best!

Re: periods. Well, I was HOPING that my ovaries went on strike (the only side effect of chemo I was welcoming) but did they? Did they b****r! Still there after EC number 4. More frequent and heavier! The last lot arrived two weeks after the previous. What's that all about? Don't they know they are not supposed to work? I hope they start behaving soon (or should I say misbehaving?)

I have finaly made a start on the Christmas front. Christmas tree has been made. Yippee. Looks great! By the way Julie. What are YOU doing to those Christmas lights??? It must be YOU! Four lots blown? Well, I'll be blown...ha ha.
Now I must get some presents...and QUICK!

Re: boys. Well, I LOVE them. I have boys too, although they are young men now. One at Uni. Yep! I remember very well how they didn't like to talk about their feelings. I had to find out how they were doing via teachers, friends..BUT they are great now. They have been very supportive ever since my DX. They ring and text daily. One of them is following BCC on Twitter. There is hope ladies with teenagers. Can't wait for them to come home at Christmas.

Have a good Sunday everyone! Sorry for the long posting but I didn't write for two days...Was having the shakes.

Lulu X

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Re: starting my pink road of cemo, 15th nov

Hi everyone, taken the last hour to catch up with all your posts. Those of you who are feelling good and positive, long may it continue and those of you who are suffering in one way or another I hope you get relief soon and will also be feeling more positive about things.

Welcome Pinchy, I'll read your blog tomorrow as I've run out of time reading the thread here and really must go to bed at sometime!

Just to say also, and I may be alone in this, but all those waiting for their first FEC, I had mine on Wednesday and apart from a headache on Thursday morning which was relieved with one Solperdine, I've had no other effects really so far. I have been wearing Travel Bands almost continually on my wrists, have taken Milk Thistle Capsules which someone on this thread recommended, and have taken the dexamethazone steroid and metaclopramide tablets they gave me from hospital. I know everyone is different in their level of reactions but just thought I'd mention it to anyone worrying that it is inevitable to get all the really bad side-effects straight away. I'm not saying that I might not get them next time but at the moment I'm enjoying feeling ok. Went out to friends last night with about 12 of us. We all took a dish along and had a delicious Thai meal (I took Thai fishcakes which I'd never made before but turned out ok). Tonight we've just come back from a Christmas Drinks party at a really close friend of mine and was so chuffed that I was able to go and not feel too bad. Just looking forward to Madness and Simply Red next week - can't wait! I know my immunity will supposedly be at it's lowest but I'll just wear a face mask or a burka if I have to! lol. I have been using that First Defence nasal spray at night just incase I've got anywhere near people coughing and sneezing over me (such as my own sons!!)

Anyway really must go to bed now. Got to finish of decorating, wrapping presents and writing cards tomorrow.

Hugs to everyone

Angie

SM422
Member

Re: starting my pink road of cemo, 15th nov

Night all, was going to do the Walton's type of good night - but can't be a***d.

Night John Boy....
Sleep well everyone

SJ xx

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Re: starting my pink road of cemo, 15th nov

Aaargghhh...how can I reply to a day's posts?

Got Biotene toothpaste and spray for dry mouth. Only woken up once in a panic with my tongue glued to the top of my mouth almost unable to breathe!

Curry? Second Sat out in a row. Not nearly as good as last week. The first being "the best" in the county...highly mmm.....

And I've forgotten anything else I wanted to say.

pinkrose
Member

Re: starting my pink road of cemo, 15th nov

Hola all.

Just thought I'd check in before bed so I don't miss too much! Dare not ask to see my pathology report, happy for the onc to explain as I am sure it would make me panic and I'd start 'googling'! She said that one lump was grade 2 and then said my grade 3 lump was being retested as she thought it might be grade 2 also ... blah blah blah?!

Christmas tree is up (Julie, I did think of you when my 12 year old was trying to untangle the lights and threw them down the stairs in a temper and now they don't work). Mince pies made and cake decorated and the kitchen looks liked a bombsite, but I don't care (these things used to bother me but really don't now) we all had a great time and now I'm feeling a bit christmassy (also had a couple of glasses of bubbly which does help).

Poppy333 - I've got my xmas do on thursday too and feel just like you can't be bothered really. My little black dress really won't look right with a lop sided chest and a white sports bra.

Millykins - I have also taste-tested coca cola cubes and sherbert lemons today. Tomorrow it will be midget gems and pear drops. My chemo starts on 20th so I need to be sure which I like best!

Hope everyone is ok tonight - can't believe I've just sat watching all of 'Take me Out' and thought it was funny I must be going mad.

Rxx

juliebtaurus
Member

Re: starting my pink road of cemo, 15th nov

yes i read mine over the drs shoulder on the computer and when he looked at me and asked if i wanted to see it i said its ok ive just read it and he laughed cos he knew what i was doing ha ha.

millykins01
Member

Re: starting my pink road of cemo, 15th nov

hi

have any of you actually seen your pathology report at all. I haven't & didn't ask to. Iknow it doesn't make a lot of difference I suppose but might make interesting reading - or may just alarm me -I have just fashioed a new PICC sleeve cover out of the sleeves of an old pink top which is much more comfy than the stocking stuffthey give you that just rolls up & looks more "natural" as it is sort of baby pink - Not done as some sort of "pink statement" but more for practicality & comfort but I suppose I could add a ribbon effect to make people give me even more sympathy hee hee!!!!
I also orederd a "Limbo" washing sleeve cos the one from boots was just a plastic bag with elastic fasteners each end that has the life expectancy fo about 2 weeks! - this is a proper rubbery one that you can apparently even wear swimming - which I know I can't cos of chemo but implies it will be very waterproof so may actualkly do the job.
have justscoffed half a pack of ginger nuts & been scolded by OH for eating chemo supplies in advance - plus there are only 4 strawberry bon bons left - oh dear another chemo basket tesco trip on the cards before next Fri methinks!!

juliebtaurus
Member

Re: starting my pink road of cemo, 15th nov

ha ha Sophie sounds like bedlam.Girls can ijust say that mine was also thought to be grade 2 and upgraded to grade 3 after surgery but my oncologist explained they have to grade it on the highest grade of cells that they find even if you have only a few of those type( does that make sense_ so if you had 100 grade 2 and 10 grade 3 cells it would still have to be graded a 3.but so what they removed it anyway xx

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Re: starting my pink road of cemo, 15th nov

Julie - 5th time lucky on the christmas lights....fingers crossed! I left my OH doing the decs this morning, came home to a house looking like a tinsel bomb had exploded - decs everywhere, except where they were meant to be... younger two kids playing in the cardboard boxes that the decs had been packed in, dogs biting the bubbles from a bubble blowing santa, tree looks like someone hurled on it... but I'm saying nothing 🙂

(and the dog hasn't peed on the tree yet, either.. think he's terrified of it, far too flashy and garish, lol)

Sophie xx

poppy333
Member

Re: starting my pink road of cemo, 15th nov

hey all
wenna sorry was grade 3, but it seems to be a lot of grade 3's for us youngsters!! they thought mine would be a 2 and it was a 3.

good no other surprises though.

ive just been out for an Indian . and i loved it. didnt fancy cooking and its been ages since we had been for a curry.

hopefully doing xmas shopping monday.

girls at their moms this weekend, coming back tomorow at 1 for the clubs kids xmas party. xxx

jules, ive got my xmas do on thursday and not sure i can be bothered to go for all the reasons you said you dint really enjoy yours. xx

hope everyone else having a nice eve 2nite
xxxxx

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Re: starting my pink road of cemo, 15th nov

Thank you all for your lovely supportive comments about my eldest - he's almost 17, and veers from being my gorgeous baby(!!! at 6ft, maybe that's wishful thinking anyhow) to this non-communicative, grunting hairball, but I love him dearly, and hate to see him hurting - esp. as there is b**ger all I can do to resolve it. I gave him a lift into town today so he could catch a bus to see his girlfriend (he's at 6th form college near Southampton, so catches a bus daily, and managed to get a girlfriend who lives near the college..hey ho, couldn't pick the lovely local lass he catches the bus with, that would be far too simple!), and then he's off to a party tonight, so hopefully he'll be able to unwind a bit. He seemed happier this morning.

I have FINISHED the crimbo pressy shopping - woop woop - now just the wrapping to do.....

My brothers and their families had been warned that money was tight this year, so I was going to do them a hamper with homemade chutney/jam etc etc... but of course I then found these great wicker hamper baskets with partitions for bottles, then the wine to go in, then chocs and biscuits, then little toys/sweeties for their children.... I don't think I have actually saved any money! But the hampers will look great!

Hope you all have a great evening, whatever you are up to. Talk soon

Sophie xxxxx

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Re: starting my pink road of cemo, 15th nov

Trish - hugs, well done for getting your face (and hair on), hope you have a fantastic night, even though you didn't feel up to it.

Sophie xxx

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

Sj. Thanks for replying about t hair. Xx

juliebtaurus
Member

Re: starting my pink road of cemo, 15th nov

Ha ha weena im sure youre boys will appreciate barbies they all like them really my daughter always made a beeline for the cars and garages.polly[ocket glad youre daughters home (probably with all her washing in tow if shes anything like mine) im going xmas shopping with mine tomorrow so better take the plastic.I had my xmas night out with work last night ,didnt really enjoy it ,they were all talking work and felt a bit left out cos i wasnt there and i had the car so wasnt drinking and they were getting louder and louder as they got drunker and drunker so ended up going home early ( its never been known cos im usualy a party animal) just wasnt in the mood .To top the lot my 4th bloody set of xmas lights have gone off and had to unravel them from all decorations AGAIN ha ha Iam not stressed Iam not stressed IAM NOT STRESSED.Ha ha Good for you Trish get that slap on and enjoy it x
welcome Pinchy

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

Girls just seen Take That on strictly and all is well with t world. !!
Putting my face on (and hair) to go out.
Love to all.
Trish xxxx

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Re: starting my pink road of cemo, 15th nov

Hi girls welcome pinchy

Got results yesterday. other than it being grade 3 instead of the grade 2 they thought it was everything else was quite positive. Wedding anniversary yesterday so went out for a drink or 2 and felt sick.com this morning. All good practice for wots to come i think.

When i was diagnosed i went out xmas shopping for my children 2boys 3 and 6. Wrapped it and put it away. Only trouble now is i cant remember what i got. Probably a couple of barbies who knows?

Sarah i too have braces and have for over two years. I have been worried about a sore mouth being intensified by all the metal.

Pollypocket get yourself out. It might help lift your mood. Nice your daughter is home.

Love to all
Deb XX

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

Hi girls.
Improvement on tough ulcer front. Tried iglu which forms a protective seal over t surface. V good.

Pinchy. Welcome. Read ur blog. It made me cry.
Keep crying today actually which isn't like me at all.
Cd see myself in u exactly. Esp when t children were small.
Also the part about friends. I always knew we had a great group of friends but they have been fantastic. All t girls on here too.

Supposed to be going to dinner tonite at s friends house. Keep crying tho. Don't want to spoil it for them all.
Xx

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Re: starting my pink road of cemo, 15th nov

Hi pinkies,
Welcome pinchy,
Sj hope the haircut went well, i did mine a grade 2 last weekend as i also thought it was better to get rid of it before it started to fall out, still no signs as yet and im same day for fec as you,
Pinkrose i dont like the w word either, i named mine marjorie;)
Pollypocket big hugs for your son, my son is 18 and has not really spoke about it alot, he asks the occasional question, i know my daughter who is 20 talks to her cousins as they have told me she is worried but she is so strong when she comes to see me, she is much wiser than her years,
Lif you wore me out just reading your post!!
have been xmas shopping with the oh this morning as he had not done anything then grocery shopping, came home and slept for 2 hours, was shattered,
Nottgal, i agree with you my relationship is fairly new and he moved in with me a year ago so i think that happened for a reason, im a great believer in things happen for a reason,
Gonna pop out for a beer tonight as local pub have a band, looking forward to it 😉
Hugs to everyone, keep warm julie xxx

Nottsgal
Member

Re: starting my pink road of cemo, 15th nov

Kaz

I know exactly how you feel. I keep thinking my husband (of 6 years) never signed up for this. With your relationship being newer, you must feel even more unsure. But I believe fate / whatever sent me my husband because I was going to need someone wonderful to help me through this cr*p.

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Re: starting my pink road of cemo, 15th nov

Ohhhh just spent ages reading your blog pincy...realy riveting....am now following you on twitter!!!!
Welcome btw....interesting ride this eh...I have a whole new vocabulary now including merkin and something beginning with v that I cannot pronunce without effort LOL

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Re: starting my pink road of cemo, 15th nov

Jo - I know what you mean about the cuddles, it's quite hard to give nice big squeezes or have a bit of rough and tumble with the kids at the mo!

Sophie - pleased your son has let things out to you a bit - made me cry reading your post! - mind you, dosen't take much these days - a man had a go at me for where I'd parked my car the other day and I just wanted to burst into tears! that would have shocked him! My son is only 11 and very different to my daughter who has asked lots of questions, cried, etc, I think the main thing is to just keep talking to them (even if they're not talking to us!)

LIF - what a great day you had yesterday, made me feel tired just reading about it! well done!

Kaz - bug hugs, it's fine to feel like that some days, I think we have to accept that all these emotional ups and downs are going to happen and I'm sure all this will just serve to make your relationship even stronger. x

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Re: starting my pink road of cemo, 15th nov

Hi all and welcome Pinchy,

I've just read your blog and i think its fantastic, I'm defo going to read the books you've recommended and i love the way you've embrassed the positives and not dwelled on the negatives, we need people like you!!!

Im now day 12 post Tax1 and feeling back to normal, no sign of hair loss (yet) i hope it goes soon as i've had it all cut all and would be gutted if i've had it cut for no reason as i'm secretly fooling myself that perhaps i'm one of the small percentages that won't loose my hair! Siily i know... I also read somewhere that Tax can cause permanent hair loss in a small percentage of people which is even more worrying!! I think i'm going to stop reading things now.

I've got two boys, aged 11 and 13 and although they've both been really good and supportive i do worry that they are secrectly worrying and not telling me, i'm just trying to make an effort to constantly talk to them at the moment, even about trivial stuff in the hope that if they do need to talk about anything that they feel they can.

My mouth is also a little sore, its not so much my gums but the inside of my lips, the skin seems to be thinning and i feel like i've burnt my tongue. I've also got orthadontic braces on my teeth which i've had on for just under a year now, so se's of mouth ulcers are double ouchy for me 😞

I'm going to go to work next week and try and have a normal week until my Tax2 on Dec 21st.....

Great timing over xmas 😞

Hugs to everyone

Sarah XX

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Re: starting my pink road of cemo, 15th nov

Oh Kaz big hugs....Its the post fec fuzzy brain that makes you feel as if everything is going too fast...and to be honest I always feel people are going to fast....I live in the middle of nowhere and everytime I go to town I have that confuddles feeling even without chemo so don't worry just go with the flow!

I tried sleeping in a buff and woke up lathered in sweat, couldn't work out what was wrong and basically I had overheated!!! They are really warm!

The secret of keeping the ulcers at bay is a wet mouth....fruit pastilles and fruit gums are ace for that as you can suck them....they are also soft so no sharp bits to cut ur mouth.

Steroids....I have em with the FEC then one morning and one no later than 2pm for 2 days...I didn't take them for the second day last fec and to be honest felt a lot better fo it!

Teenagers....omg I had a serious meltdown with my 17 year old this week...he has been marching and protesting about these fees and was v cross I wouldn't let him go to London on Thursday and thank gawd I didn't but there is an atmastphere still....life is difficult when you are 17 and think you know everything....I can remember being a bit like that myself and often look back with horror!

poppy333
Member

Re: starting my pink road of cemo, 15th nov

welcome Pinchy. hope you find this thread helpful and supportive. xx

minny, well done on the hair lass. xxx i sleep in a buff, and its nice and warm.xx

ill try and address all points,

flat lemonade, very refreshing.

i'm on fec and have one lot of steroids with my cemo, and then 3x3 times a day after

i haven't got kids, andy has 2 girls 7 and 9 that live with him, they have been ace, if they see me upset they hug me and tell me they love me.
however my 2 nephews 16 and 18, who i have always been very very close to cant cope with this, they haven't even wanted to see me yet, which i find really upsetting, think they are scared ill look different. they have said they don't want to see me with a bald head and are just scared. the younger apparently told his friend at skool, but eldest has gone into himself about it. texed him and said im coming to rob your hats, and he texed back and said cool.

yesterday i had a mini mealt down, it was my first day outside after fec 2, and it was like the world was going too fast and noone was stopping for me to get back on, i tried to go shopping and just walked in and out of shops thinking this is all so irrelevant to me. then in the car a man let me go and the island then pulled in front of me, i wanted to scream, ive got Fecking cancer aaaaaaaaaaahhhhhhhhhhhhhh but due to the throat operation i had 11 weeks ago today!! i cant shout. lol.
got to andys took the dog a walk and sat in the park crying like a sado. andy came home and i cired again. we went out for food and had a lovely eveing.

with andy , i felt like id let him down a bit and that i don't look like the girl he met 9 months ago. , scarred boob, 7 inch scar across my throat, no hair and no lady garden. but he is fine and very protective over me, and all he seems to hate is when i talk down about myself , or worry about others when they dont worry about me.

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Re: starting my pink road of cemo, 15th nov

Crikey...go away for a bit and it DOES take ages to read this lot!!
I have been soooo busy...yesterday I went to work and we had a machine break down we thought was something electrical so...called an electrician who arrived in less than an hour, must be a record and we all agreed to kidnap him!!! Well he didnt have the right fuse so muggins here (the boss) got sent on a 70 mile round trip to get the elusive unusual fuse! Why could it not be a common fuse? Anyway all got sorted and the work got done. Then in the evening we all went out for a Christmas social in the best pub in Devon and ate ourselves silly....and then i was up at crack of dawn to appear on the breakfast show at BBC radio Somerset where I am often part of the current affairs panel. Got to say a lot about bc and the fact that it affects sooooo many younger people and how its not just a lump but any change that must be looked out for. So that was my good deed for the day!
I am feeling good but a bit wishy washy at times which is really frustrating for a very active person like me! I had a low red blood count last time whereas white was good and the period from hell this week....worse one since I was about 15! I thought chemo was supposed to finish them off in people of my age....anyone any advice on this?

millykins01
Member

Re: starting my pink road of cemo, 15th nov

Hi Pinchy & welcome
Just had a quick scan of your blog &see you have the same ONC as me (we're not allowed to use names here but I saw on your blog!!). I've only met him once cos I have seen his registrar. After one meeting I found him very charismatic felt safe somehow. I am on the bog standard 3 FEC & 3 TAX starting next Fri- delayed cos of wound issues. SOunds like you are being very proactive in your approach & fabulous that it seems to be working so well.

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Re: starting my pink road of cemo, 15th nov

Hello everyone! I'm new to the forums, although I introduced myself on the 30 November thread too yesterday before my 2nd chemo. - I'm 37 and was diagnosed on 13 October this year - two lumps in breast, one in lymph, plus pre-c in ducts, all on right side. Having chemo first and surgery after.I've got a four year old daughter and a two year old son.

Am on new drug trial at the Royal Surrey in Guildford so having carboplatin plus docetaxol combined with herceptin and its new sister drug pertuzemab x6. It's a long day every 3 weeks.

Spent most of last week in hospital after white cell count dropped really low and I got quite ill so from now tomorrow I'll be having injections from the district nurse to stop that happening again, phew!

I've had some great news this week - the lump in my lymph has disappeared after just one chemo and the feelable 4/4cm one in my breast has shrunk considerably! My consultant was amazed and said he's never seen such a large, quick reaction. Whoo hoo!

I've been blogging about my experiences so far on http://pinchypants.wordpress.com and am finding it really therapeutic.Hope you like!

I'm just starting reading through the whole of this thread so forgive me if it takes a while to get to know everyone. There are a couple of lovely familiar faces from Twitter (I'm @pinchypants) already so I think I'm going to feel very at home here.

Good luck to you all and catch up soon x
Pinchy (Maja) xx

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Re: starting my pink road of cemo, 15th nov

Pinkrose - I hate the 'w' word too. Prefer to call it my hair extensions. Have only worn it once as hair still hanging on in there (just)
Sophie - how sad. Boys are much more difficult to reach emotionally arent they? But great that it's come out into the open now, and he's talking to you about it.
Dry mouth solutions - Strongbow cider!! But unfortunately not for first couple of days post chemo. (Looks as though I could end up with another problem!!)
Me too not looking forward to Tax, but cross that bridge....

pinkrose
Member

Re: starting my pink road of cemo, 15th nov

Just caught up with 7 pages of posts. All I can say is huggs to everyone you all seem to be doing so well! My 15 and 12 year old girls are coping ok really. Eldest did have a meltdown last week over something and nothing but after lots of hugs and reassurance seems much better now.

Wig lady came yesterday (does anyone else hate that W word - there must be a better one - 'alternative hair' anyone?) and I felt so much better. I cried when she opened the door (again) and she was really good saying she sees 2/3 people each day and most do cry. 2/3 PEOPLE A DAY I thought, there must be half the population out there wearing alternative hair. Anyway, £180 later (did buy the expensive goody-bag with 'special' shampoo - I'm such a sucker) and I've got a lovely one called Cody, and I must say I am amazed how good she looks (sorry to all those people who told me this over the last few weeks and I didn't believe them).

Got my pre-chemo talk next Wednesday but to be honest, I think I've got more info from you lot.

Have a good day everyone. I'm off to get the xmas tree, make some mince pies and decorate xmas cake - I must start feeling christmassy for the kids - don't really feel like it - this BC is all consuming at the mo.
Rachel

little_angel
Member

Re: starting my pink road of cemo, 15th nov

i read somewhere that tonic water may be soothing to drink too

my steroids are dexamethasone - just says take one three time s a day - no time limits

Minny
Member

Re: starting my pink road of cemo, 15th nov

A plus point of having no hair... went to bed with a hat on, feeling rather chilly. Woke during the night a few times, as i do, hot sweats, thirst and pee stops. Take the hat off and cool down almost immediately. It felt quite nice actually.

What's left of my hair, (had a no1 ) is coming out fast. Loads of it in my sleepy hat, haven't checked my pillow yet. For me, i think i've timed it right.My 2nd FEC will be on Friday.

Re steroids.. are they called dexamethasone? says on my pot take last dose before 6pm? I'll put up with staying awake as long as i'm not sick!!!

Wishing everyone a good day and will be popping in here lots to keep up and 'cause i too am a BCCaholic, XX

SM422
Member

Re: starting my pink road of cemo, 15th nov

Alicats
Thanks for the tip, will give it a whirl, just worried that FEC2 is Friday, and it will become worse!

SJ xx

SM422
Member

Re: starting my pink road of cemo, 15th nov

Hi Trish,
I am blond (with it's share of grey natural highlights) and have lots of very fine hair that sheds at the best of times, have just noticed shedding more (ie more in my brush and plughole) and scalp feels weird.
Funnily enough, they grey ones seem to coming out first!!

I took the decision to have it chopped off rather than it fall out very early......can't be doing with hair all over the place, and it's then something I have control over.

Wasn't offered cold cap and didn't ask because I have lots of hair and it may not have worked, and then I would have been gutted!!

SJ xx

little_angel
Member

Re: starting my pink road of cemo, 15th nov

hello everyone (i can't keep pace with individuals i don't think - i'll just get everything wrong if i try to reply to you all personally - did that the other day)

i am sitting here weary post FEC 2 , i've been given steroids both times -seems some of you haven't. i have been trying to take them before 2pm but on the day of the treatment i had no choice cos they put them in by syringe and my treatment wasn't finished until 3pm which could explaing why i was so restless thursday night after the treatment.

my kids are teenagers like many of yours and they too are struggling to get their head round mom having breats cancer, it really is a yukky time in their lives for this to be happening and it is so frustrating for us as moms when they will not talk and no there is no cuddling them better any more is there....my middle one - a girl of 16 is my worst - not telling me stuff re school, concerts or even parents evenings and constantly threatening to go and live with her dad - deep down i think she is so scared. there just doesn't seem to be any support for teenagers and to be honest if there was, how many of them would access it/engage with it anyway? mine have all been told there are mentors/counsellors at school but they will not take up the offer..and yes there are other agencies but what teenager is going to make the effort to go and see a counsellor when it is all we can do to get them out of bed most days...it isn't cool to admit they might need help. and in the meantime - we get the flack!!

i am still worrying about TAX which i have to come after 4 FEC - is there anyone there for whom it hasn't been worse??

Guest user
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Re: starting my pink road of cemo, 15th nov

Have you tried lemonade. I had a dry mouth for last 2 fecs and found if my mouth got too dry if I rinsed with lemonade and it helped. The chemo drys our saliva up and water just didn't seem to make my mouth feel any better whereas lemonade did.

SM422
Member

Re: starting my pink road of cemo, 15th nov

Oh Sophie, bless him - how old is he? I know my 19 yr old son is struggling, but I know this because the friends he talks to, are also my friends and they give me the heads up, not the details, that's between them, but just when he's having a bad time......he's not had a melt down, but close to it!

Have tried ice cubes and Green and Blacks Choc Ice cream by the bucket load too.....hey if it's the worse thing I am having to deal with, so be it!!

Hugs to both of you xxxxx

millykins01
Member

Re: starting my pink road of cemo, 15th nov

Sophie - so sorry about your son but better to find out I agree- males find it so difficult to talk at the best of times but I hope he will find someone he can talk to.
Sj I Have the same large head prob - have always struggled to find hats to fit. My wig fitter did say it was better to have a larger head for wigs as if it is small yhey may be loose!!!
I seem to have come out in sympathy ulcers this morning cos I have one at the side of my tongue - so glad I got that emergency bongela now! I thinks it can be these niggly non serious side effects that will get you down (but will wait & see for myself!)

re steroids - I was told I'd have them with FEC too so willwait & see what I get given??

am back on the senna for painkillers as my arm required some help so feel back to square one. also hadn't quite thought about my inability to now properly cuddle daughter cos 1 side has the picc & the other my MX wound - argh!

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

Me again.
Sj I'm just a few days ahead if u. Can I just ask u. Is your hair starting to fall out now. Did u use t cold cap?
Am I fooling myself that my hair is just thinning I wonder. Would be grateful for your comments xx

3 post in a row. !! That's definitely an addiction. Xx

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

Hello Sophie and SJ too. Lack of brain power means I have to write individual posts so I can look back n check t names. Sj your hat sounds lovely. Good luck with t hair. I'm about to get up and see how much of mine is on t pillow!
Sophie. I feel sorry for t boys. How old is your son? Mines eighteen next month.
I think it's good sometimes that they do let it all out but I hate the way they feel they have to protect us.
My oldest girl had a big melt down when she came bk for her reading week but she didn't do it in front of me.
She was worried about all of us and her brother n sister and how they would cope while she was away.
I told her that I was still t mum and that was my job.
I hope t college have been nice to him. He needs a great big cuddle.

Have a gd day everyone.
Trish xxx

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

Morning girls.
Deb thnx for your advice about t ulcers. Mine started when I fell n bit t inside of my lip. My friend's husband suggested difflam. He's a dentist. I'll def try and get some.
It really got me down last night.
Thank u. Xx
Trish x

Guest user
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Re: starting my pink road of cemo, 15th nov

Morning all! SJ, good luck with the hair crop, thinking of you hun, you'll be fine when it's done, I'm sure. Plus, keep thinking of all those hats out there.. you may discover you just had 'big hair', and not a large head at all 🙂

Can't think what to advise for dry mouth - have you tried sucking ice cubes/crushed ice? (The thought of it makes my teeth shiver, but it sounds awful, so I'm trying to be helpful, honestly!)

Eldest had a melt-down on me last night, after I'd had a msg from the college asking where he was. I knew he'd caught the bus to college, but it all got on top of him and he spent the day hiding out in the library, and missed classes. All came out - he felt he was mucking about at college whilst I was sitting at home dying...eeeeek!!! Think I've boosted him up a bit, and he is going to try to see the college counsellor - but he has always been one of these kids who will not discuss anything personal with anyone outside the family - to the point where he'd get tied up in knots at primary school when asked to write about 'what I did in the school holidays' - he'd get furious about it, none of the teacher's business, lol. In the end, I pointed out that he could make the essay up.... and it would prob. be a lot more interesting than what we actually did during the hols!! This time, though, I think he is starting to understand that talking things over with someone who doesn't know him/won't judge him etc etc could be a good thing, and I've impressed upon him that he doesn't have to be strong 'for' me, I'd much rather know how he is really feeling, and if we both end up in floods of tears, well, then we prob. needed to. Fingers crossed....

Gosh, this bc gets ever more exciting, doesn't it? Not.

Sophie xxx

SM422
Member

Re: starting my pink road of cemo, 15th nov

Hi all
Hope everyone who is feeling crook is feeling better this morning - ulcers are the pits.....I just have an incredibly dry mouth, have tried pineapple, mouthwash, but it just doesn't help but hey in comparison to what some of you are experiencing it's nothing.

Finally, I am having all my hair chopped off, was supposed to do it last weekend but due to friend's son having flu and her hurting her wrist, have had to wait a week. I am more nervous about it this week, than last although it is about 10 degrees warmer! I also have a large head but have got a wig to fit, and have bought a nice squashy velvet hat from M & S, hoping I can buy more hats, now no hair will make head smaller!

Now day 15 post FEC1 and finally feel something like, but still struggling with general tiredness, went Christmas shopping for a couple of hours on Thursday, felt so tired yesterday......turning into an old lady 😞

Have a good Saturday, one and all

SJ xx

Midge
Member

Re: starting my pink road of cemo, 15th nov

Hi Pollypocket

Sorry for butting in on your thread but I had horrendous mouth ulcers on my first tax. I called then Africa, Asia and Australia, they were huge. The onc prescribed me lidocaine paste to numb them, it was brilliant. You can also get lidocaine lollipops to numb your mouth. For tax two I started with difflam mouth wash before chemo and rinsed regularly, this stopped so many forming and I used the lidocaine on the little ones that came and they quickly disappeared. If you are on chemo and you phone out of hours and tell them what you want they will often just write a prescription without seeing you and just pick it up. I did that many times.

I really sympathise with your sore mouth

Debx

PollyPocket
Member

Re: starting my pink road of cemo, 15th nov

My lovely big girl back safely from uni.
Can get the Christmas decorations and tree over weekend.
Mouth still killing me. Teeth hurting now. Fed up. Have seen mouth ulcer stuff called iglu which forms a film over t ulcer and u can keep reapplying it. Will b at chemist first thing I'm t morn.
Am really fed up with it now :((

Guest user
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Re: starting my pink road of cemo, 15th nov

Mine is white grenache 😉 still tastes a bit vinegary but getting better the more i drink, yummy yummy xxx

juliebtaurus
Member

Re: starting my pink road of cemo, 15th nov

HI GIRLS I COULDNT GET ONTO THE SITE THIS MORNING AND BEEN OUT FOR MY XMAS MEAL WITH WORK Whoops im in capitals ......so sorry i haven't been neglecting you all.Anyway Kim hope you soon crawl out from under the Tax truck Big hugs xxx
I had steroids for 2 days after Fec each cycle so i thought it was standard on all chemo regimes .
well done Minny for the hair shave another tick off the to do list.Hope everyone has a good weekend ,I think my white zinfandel mouthwash is calling me as well ha ha much better than corsodyl...... Julie