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starting my pink road of cemo, 15th nov

kimmie
Member

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

Hiya cat
Well done you your halfway now hope the se are kinder to you this time. Im a little better thanks still not right though. No didnt see that was it good?
Im still watching house gift at 2 are you? X

Cookie_Monster
Member

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

Hi pinkies

Glad you're ok kaz! Had wondered where you were. Big hugs, what a drama, they tell you to eat flavoursome food to counteract the metallic taste, clearly not curries.

Hi kimmie, how you feeling hun? Did you see come dine with me this even?

SJ sorry about your aunt, never rains but it pours, big hugs!

Pinkrose i was thinking about booking on the younger forum too, not sure what to expect though, did you speak to someone about it?

Nottsgal - love the poems, keep them coming, maybe we could sell Xmas cards for breast cancer next year!

Had EC3 today so back with my friend fred the sick bowl, he missed me I can tell as he's hugging me close...haha. Am I going crazy? Have hit the point where I seem to find everything funny...I guess laughter is the best medicine.

Good news is doc has dropped dose to 3 (from 4) EC and 4 Tax, so I'm kinda half way..yay! Only not quite sure I understand why, have an onc like SJs, in and out in 2min. He just said the risks were starting to outweigh the pros and my liver and kidney are struggling, did say it was nothing sinister so no need to worry. Cross fingers handle tax better.

Big hugs to everyone, hope your Feccing is side effect free!

Cat xx

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

Nottsgal keep em coming 😉

Pinkrose i had to pay £50 towards my alternative hair,

Bacca i will def ask about it and if need be pester!!!

Dob hope all went well today,

Kaz hope you`re feeling better now (( hugs ))

RE xmas, im not really in the mood either to be honest, as for cards i wait til i get one then write one back, cant be bothered to think about who to write them to!!!!

((HUGS )) Julie xxx

kimmie
Member

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

Hi lif
I am on no4 and dont have a shiny head have a little bit of stubble all over which is weird as i thought id be like duncan goodhew but am not x

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

Hi All!
Crikey Kaz...the curry experience is certainly one not to be repeated! A friend of mine was taken ill with a bug on Friday and half the school seem to have it :0 Small son now being scrubbed on entrance to house!!!

I must admit I cannot get on with my alternative hair even though it looks great...because I have a thick covering of half mm hair it just feels weird.

Can I ask folks who have done 2 or 3 fec....have you a completely bald shiny top or is yours really hairy too?.....I'm confused as to how much hair one is supposed to have or not have???

pinkrose
Member

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

NOttsgal - that made me laugh! I'm off now to make one of my own.

pinkrose
Member

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

Sorry - Yorkshire comment confusing - I live in Kent now (moved down from Yorkshire 11 years ago...

Nottsgal
Member

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

If you keep asking for these, you only have yourselves to blame. (In case anyone's wondering, Sophie Triphazard made up hampers as Christmas presents this year with home made goodies but also ended up spending more than intended on extra bits to go in the hampers. She said next year she will give people poems instead. I'm sure she meant nice poems, not my dodgy verses).

You've eaten last year's chutney,
You've eaten last year's jam.
I can't be bothered making more,
That's just the way I am.

poppy333
Member

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

what are the dates

are you going to get the train down and stay??

pinkrose
Member

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

Will absolutely do poppy333 (it's the yorkshire in me) don't like to miss out on anything free!!

I have booked to go to the Breast Cancer Care YOunger Women's Forum in January in London - anyone else planning to go?

poppy333
Member

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

pinkrose, thats not fair, are you sure you dont get a free one . i thought it was for the nhs, not down to counties ,, ask the cemo nurses
xxx

pinkrose
Member

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

Hi all.
Glad you are ok now Poppy333, bit of a scary time ... no more curry for you my dear!

Re: Wig voucher. My voucher was worth £50 off a wig. No free wig in this part of the country ... I feel cheated ... just reading these posts has made me realise how things differ from county to county.

Love the poems - I'm rubbish at things like that - keep them coming. NOttsgl, it's not pathetic feeling like you do over your alternative hair - I am obsessed by the whole hair thing and I've not started chemo yet (sorry ladies I keep going on and on about this!) I keep breaking into a sweat everytime I look at my wig.

Dob - hope all went ok today

Feel quite guilty about xmas. BC has taken over and I feel I'm just going through the motions. Pretending to be excited for the kids and family but really I'm just looking at the calendar and worrying ..

Hoping for a restful sleep for all tonight xxx

kimmie
Member

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

Hi karen
I feel mixed about xmas and a case of having to make the best of it
Im sad as i normally love xmas and chemo is taking over. In some ways i just want it over x

Nottsgal
Member

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

I wasn't feeling in the mood for Christmas but my hubby has put lights up inside and out and put decorations up. He's also got his Christmas CDs out so I am now more enthusiastic. This will probably all disappear on Monday with FEC-2.

poppy333
Member

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

hey

thanx all for the lovely messages. xxx

missed you all too.

ill have a word with my onc at next appointment, than bacca.

as for currys, im going to be so careful from now, as that really scared me lol... however with all the naughty food around at xmas being good isnt that easy.

love the poems nottsgal.

i have had my xmas cards ready to write for 2 weeks now and i cant be bothered, as im not feeling in the mood. im gonna to wish a happy xmas when im not in the mood for saying it. barrrr humbug? nah, i love xmas. just think cards in the grand scheme of things this year havent reached the top of my list. staying well has.

maybe ill write some tommorow. xxx hat has everyone else done, or feel about xmas

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

Nottsgal - BRILLIANT! That first one on your last post is definitely definitely definitely going to be used... that was my first real laugh out loud moment today, made my daughter jump out of her skin, so had to share it with her. She's now quivering like a demented jelly trying not to laugh.

Keep 'em coming! I'll try and think of some too.. but not sure I can top that one~!

Sophie

Nottsgal
Member

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

not quite as old as Pam Ayres ;0)

millykins01
Member

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

Pam - Pam ayres perhaps - very good!!!!

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

@Julie/Kaz

Not sure about the hospital system but at home I'm scored on a list of SEs and their severity. My goal is to stay low risk. Hmm.

Neupogen is a choice on the NHS. It is tiny doses and such a small needle compared with everything else we've gone through to date: it needs to be given daily not less then 24 hours after chemo and then daily til your onc thinks it's enough to pull your neutrophils high enough. Certain drug interactions mean some shouldn't have it but it is used regularly to boost cells to harvest for bone marrow transplants etc as well as avoiding neutropenia so well known and understood.

Ask your onc.... or phone (and later pester) his secretary and ask her to ask if you haven't an appointment due or ask your onc nursing team...they do seem to return calls quite effectively. It's worth it if it reduces your risk of infection and delays in treatment. ((HUGS))

Nottsgal
Member

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

Sophie, be careful about encouraging the poems - they get worse (see below)

Last year you got hampers,
full of lots of lovely stuff,
This year you get nothing,
which proves that life is tough.

A poem is a special gift
The pleasure it can bring
A poem is a special gift
It cost me not a thing!

Nottsgal
Member

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

Welcome Dob and hope you're soon feeling better. At least the first is now out of the way.

Kaz, sorry to hear you've been ill. Julie hope the bloods are OK for Friday's treatment.

Summer, my 2nd FEC is next Monday. Before that I have the delights of getting my gel prothesis (tomorrow) and havng my arm measured by the lymph people. Then Friday I have to go back to the hospital for bloods - no time to go to work.

I went into town today and got as far as the door of one of the wig shops where I can use my voucher and started shaking. I think it was some sort of panic attack as I just wanted to get away and was struggling for breath. Pathetic, I know, when all of you are doing so well with your alternative hair. Anyway OH has said he will come with me if I go back to the wig shop but maybe the cold cap will work. Today is day 15 post FEC-1 but I know it could go within the next few days or after FEC-2.

Good luck with Friday FECcing people.

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

Bacca who do i ask about neupogen? the oncologist came into see me about something else and she said this could be a problem everytime, not sure why she thinks that and of course i didnt think to ask, xxx

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

We missed my daughters award ceremony yesterday - how bad a mother do I feel. Just went to bed early and never gave it a thought.

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

hi trisha no not tried igloo i will give it a go thank you. I have Nystatin prescribed which is making it much less sore.I don't have ulcers.

bacca I think you just explained the steroids to me as I had 1 injection 24 hrs after 1st cemo.

xx

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

Kaz that sounds scary. And no curry!!!!!!!! How many more sacrifices do we have to make.

Welcome Dob hope today has gone ok. XX

little_angel
Member

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

been back under duvet for a few hours cos supposed to be trying to go for a curry tonight but seeing the curry nightmares of late has got me thinking i'd best not go...i feel like a passenger ito life at the moment....gosh everyone running round like mad pre chritmas and me moving at snails pace - unheard of!!! want to go for my curry - getting the energy but scared to go now!!!

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

Kaz, sorry you've had a scare...how awful for you. Julie, sorry your bloods are low too. Ask about neupogen both of you please (I have neulasta...one tiny injection after 24 hours and a bit of muscular backache for a couple of days was a small price to pay to keep my bloods up and looks like it worked...it does for 85% of people). Neupogen does the same but more doses but they really are tiny needles and keeps your immunity up and reduces stressful delays in treatment.

Nurse was pleased with my hair which she checked over...lol. Cold caps were colder this time as I'm now alopecia score 1...but that's all over and not chunks so happy. I mention it as I know there are a few trying to keep their hair. But great that the right wig works SJ :))) and I'm hopefully getting mine next Tuesday finally.

Onc appointment next Tues as she's not happy with my tingly fingers (me neither). Hope he'll prescribe pyroxidine...I'll mention it when she phones tomorrow and hopefully get it sooner as may help before it gets worse. Typing uphill is irksome...lol.

Sticking with my week three sag paneers courtesy of Sainsburys and anything the S, the LC and Asha's throws my way (won't risk anywhere else as long as my bloods stay up - stubborn, eh. Several family birthday meals in the three weeks around Christmas....we go at 6 so it's quiet and expect that being veggie helps. And it's almost my only vice :S.

Had my dex halved and still having yucky SEs now...swimming head and eye issues. Tomorrow I'll take only a third as can't cope with this. The milk thistle is doing the liver bit so will be ok.

PollyPocket
Member

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

Summer have u tried iglu for your mouth ulcers. It really helped me tho it's odd stuff.
Give it a go.
Trish xx

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

SJ you don't have a sore mouth aswell as throat do you ? Just a thought you may have same as I have.

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

Oh, and apparently my chemo ward ('my', lol) also gives us each a free bandana.. which is nice! They sell scarves and bandanas at cost price too, which is going to be worth looking at.. always nice to combine a hospital visit with a bit of retail therapy

millykins01
Member

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

Kaz sweetie - sorry you've been so poorly - A warning to us all there - NO CURRY |(unless it's home made of course!!!!)
I do so hope you are better soon - I was going to PM you this afternoon to check of you were OK but I'm afraid I put on tinkerbell for SOphie & promptly fell asleep after my V early morning.- So hope you feel better soon & what a bummer about having to cancel things but that seems to be how it goes.

Thanks for reminding me about the wig voucher I must make sure I get that sorted on Fri cos she did say but I never got it.

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

NHS alternative hair - in Salisbury the a.h. lady has a fortnightly hair clinic, and all chemo patients go to her for a fitting and free NHS wig, no voucher offered - but she had a good selection from what I could see spread around the room - and the clinic is held on the chemo ward in a side office, which makes life easy, and I didn't have to psych myself up to go to a shop for something I didn't really want.

Sick notes - my gp has been fab - I was going to get the onc. to do sick note as mine runs out on 24th, but as I was in gp filling in forms, I asked receptionist if gp would do it.. no probs, OH picked it up for me this morning.. signed off for another 13 weeks from 24! Work will be so thrilled... lol.. they actually did know anyhow. Didn't need to see gp or anything, and didn't need to be me picking up, which is handy to know for next time.

Free prescription - has everyone done this? 5 year exemption certificate, if you haven't - get it done before this government decides it's another thing they can cut...

Sophie xxx

PollyPocket
Member

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

Kaz gd job u posted today we were going to send out a search party !!!
Sorry to hear u have been ill. I'm supposed to be going out for a curry this eve. Just txtd my friends to ask
If we cd go for s pizza instead.

Hello to everyone else. Hope u are feeling ok.
SJ hows ur throat?
I'm amazed too that people haven't noticed my alternative hair.

Bacca hope u got on ok today. Think there's a fed of us tomoro n Friday.
Hi to everyone Ive missed. Hugs to all.
Welcome to our newbies.
Trish xxx

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

So glad people are warming up to their wigs and impressed that some of you are actually buying them off Ebay without trying them on first.I fear I would get one and end up looking like a transvestite with it on..:-(
SJ and Emma rock on! Wear your wigs with pride! I hope the favourable comments from people will give you the confidence to get them out of their boxes.
Pinkrose: have you asked your BC nurse to give you a voucher for the wig? Apparently we are entitled to get one courtesy of the NHS. I got mine with the voucher and I have got to say it's really lovely. AND expensive. But I didn't pay a penny!
It looks as if loads of women on the thread will be having their chemos in the next few days. I am due number 5 tomorrow. EEEK!
Good luck to all the ladies losing their chemo verginity this week..lol. You'll find the reality is a lot easier to bear than what you imagine.And not everyone gets desperately sick. I haven't been too bad so far (touch wood).
Kaz, sorry about the curry incident. Best to be avoided in the future.
Hugs
Lulu X

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

Kaz - of COURSE we missed you! So sorry to hear of your woes.. this gets worse and worse, doesn't it.. first no hair, and now no curry...aaagh! and then missing all the stuff you had organised. Hey ho, next year WILL be better xxxxxx

Too funny about the wig - I dare you to take a piccy and stick it on PP forum...

(if you do, I'll take one of me in my ebay mistake..also headed for dressing up box but worth it for the giggles we've had over it)

Sophie xx

kimmie
Member

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

Hi karen
Sorry youve been ill it is wise keeping off the currys
You rest up and im sure youll feel better soon
Sending you a big hug hun
Kim x

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

Kaz - so sorry you've been so ill. xx

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

Poor you Julie. I hope your bloods pick up again for Friday. I know what you mean about the presents. What with a nosey OH, 2 excitable and nosey sons (11 and 9) and a 14month old, there is no way I'm putting the presents under the tree until Christmas Eve. Just think next CHristmas we'll probably have a dog to add to the madness too!

SJ - that sounds great about your 'alternative hair'. It's given me the encouragement to try and visit Emma's wig shop in Hove now when I can, although don't know if I'll get there before Christmas.

Dob - welcome and hope you found today not as bad as you anticipated.

To all those not feeling so good today, hope you feel better very soon and hope everyone has a better night's sleep.

Love and Hugs

Angie xx

poppy333
Member

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

hey ladies

haven't been on here for a while, have you all mist me??

saturday andy and i went for a curry, lovely, and then i dropped him off to his mates bday bash. an hour later im doubled over in pain, sick, upset tummy and past out. ipanicked as it was day 6 after second fec, and id not been feeling great all day so i called ambulance , and spent 6 hours in A&E. couldnt get hold of andy, as no signal in hospital. had left him a note, he came in p$$$d then panicked and couldn't get hold of me. so was well stressed wen i got back in taxi at 3.30

they wondered if the coil i had had fitted 8 days prev had moved, but ti hadnt, so gave me loads of antibtoics and painkilers. im not normally an ill person, and i cant get my head around the fact that im not going to be feeling good over the next 6 months.

still in oain today, went docs and its a tummy bug. so ive been told to not have any dairy, or currys again. ! no immune system this week. as this is week 2 after fec and im gutted as last time it was my best week and i just feel crap. ive cancelled all my events for this week, works xmas party, and legion meeting, and a xmas lunch.

last week i ordered a wig off ebay and paid to have it altered as was too big, put it on last night, andy and the girls thought it was one for them to dress up in. it was sooooo awful. so that was a waist of money total. but the girls get a wig!!

SM422
Member

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

Hi Girlies
Just back from Christmas lunch at the school where I am a governor, and gave my wig it's first public try out. Very few of the staff there know that I have BC, and therefore having chemo. I know we say we don't like the Oh don't you look well, and other associated comments.
However, even two male members of staff, in addition to many of the female staff I have known for years, commented on my new hair cut! The wig is a very close match in colour and the style is just a bit sharper than my normal. They don't know that I am having chemo, and I can only assume they are being genuine. It did my confidence a world of good, as it still feels very strange wearing it although I have worn it around the house.

One of the staff is a personal friend also, and knew about the chemo, said to me how good I looked with a new cut! I explained that it was a wig and she said to me "prove it" because of how good it looked. We have the sort of relationship that she knows I don't like things said as platitudes, she was amazed when we went to the ladies and I "proved it"!

Although, I am still happier in hats/scarves, I will now wear my wig with more confidence.....as and when needed....

SJ xx

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

Hi girlies, hope everyone is well, have been for my pre chemo assessment this morning and my bloods are low, gotta have them re done on thurs and hope they have come back up for chemo friday, they are going to phone me and let me know if i have to go or not, she did say if you were coming for chemo today we wouldnt do it, i am keeping everything crossed as she said if its delayed i will have it on xmas eve oh joy!!!! feeling bit down in dumps really but i know there nothing i can do except hope, then went for physio for the cording, she was pleased with me 😉 just wrapped xmas presents up but not under tree as my oh is like a very big kid and i know he would be poking and prodding 😉 hugs to everyone, julie xxx

pinkrose
Member

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

Dima - thanks so much for info in headgear. Will get some ordered, so they are ready and waiting.

Triphazard - I agree. Sounds like a terrible parody on a toy. I'm not sleeping well either and am very tearful (well, that's not new). In fact I am fed up with crying, even cried during coronation street last night for goodness sake. If anyone else says look at Sally can you believe she's wearing a wig - you can't tell. I will not be responsible for my actions - in fact I may cry in front of them, on purpose and loudly!

xx hugs again xx

millykins01
Member

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

Sophie - I'm Fri too & the sleeplessness is starting to kick in for me too - up at 5 today. I was the same before my ops, results meets and last weeks run of tests. I find the anticipation far worse than actually doing whatever it is that happens to be making me nervous so will prob wake up Fri AM & feel OK - A bit like exams at school (cold shiver down spine!) Once in the exam room I was fine cos it's like - I can't do anything about it now so may as well get on with it. almost want to get rid of hair right now & be done with it rather than all this waiting for it to start going but don't want to upset my mum for christmas so will keep it for that

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

nottsgal - thank you, poems filed for next christmas...lol. Anymore suggestions, anyone?

Sophie xx

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

Hi dob - welcome along! My first chemo (doesn't that sound like a horrid parody on a toy?) is on Friday.. so long as they really have taken in that my PICC is going in that morning too... still have nagging feeling they will turn round and say they don't want to do chemo the same day, despite assurances that my treatment will go ahead.

I've been feeling sick for last couple of days, and if I thought I was sleeping badly since dx, well, the insomnia has certainly stepped up a gear since then. Mostly I'm just consciously worrying about money, but I know that it's Friday that I'm really fretting about. We'll be fine, all of us.

Hope all went ok for you today

Sophie xx

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

fec 2 is nxt wednesday - I think the same as nottsgirl

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

Hi girls i don't drop in that often but always read. Good luck for everyone this week hugs to all x
Sore mouth did turn out to be thrush so hoping it doesn't affect the bloods today. I don't want any delays and I like thinking it is a third of the way through too. It's the only way to look at it.
My hair started to come out today - I am still not nearly prepared emotionally for that but i hey I do have my wig. Feel like if i glue it on no one will notice ha ha!
Best wishes all I do love reading your comments its a great support x

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

Got my cold cap on...going to be a late lunch. My shedding is correct apparently so sticking with it..

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

Hi everyone

Hope you are all doing o.k and for those of you are feeling a bit crap a big hug for you.

Im feeling a little less fat today thanks girls, you made me feel more positive, I put my makeup on, and got dressed up and feel better for doing so.

Dob, I hope your first chemo session went o.k. and that you feel ok after it. I have had two now, four left to go!

Well today I went out in my skull cap and hat without my wig because my head was getting hot and itchy in it, I didnt go far but felt very comfortable.
A good place I have found for hats that are nice is T k maxx and they always have different ones in.

Take care
Mel x

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

Pinkrose - have a look at the site emma suggested - 'Annabandanna'. I bought a beige 'bucket hat' for 6 quid, a soft sleep cap for 3 quid which is also useful for wearing under a scarf - helps to stop it slipping apparently. Also bought a navy scarf that is elasticated at the back and has a matching scrunchy to go with it - 5 quid. I NEVER wear hats or scarves usually but hey ho, heading for the learning curve. (Also have 4 wigs plus a fringe on a velcro strip which is a great idea if like me you dont want a bare forehead under your hat/scarf). Well prepared or what!
xx