Emma - it is strange how things take so long! Think I have to go to Southampton for genetic testing, but it won't be til the summer (providing consultant hasn't had a u-turn on agreeing that I should be tested...). Hadn't thought of being tested for other lovely surprises that my genes might be hiding... oooh, do I WANT to know? Suppose the issue for me is that I may not want to know, but kids might... something to mull over, anyhow! But not before Christmas...
Bacca - sending follicle freezing thoughts in your direction. My best advice to coping with alternativefurryanimal clinic is to wear make-up - about the only time I ALWAYS wear make-up is when I (infrequently) go to the hairdresser cos you spend so much time in front of a mirror - so working on that principle, I put some slap on today, and it def. helped.
In all honesty, I don't think she's ever had such a speedy appointment. I went in, told her I didn't care what cut/colour/length it was as long as it didn't look stupid, tried on a blonde streaked one that was too pale for me, then tried on hazelnut creature and was so surprised that it looked 'normal' that I said 'that one please' and took it and left. She did agree that it was a good creature, said I could try more if I wanted, but I have better things to do. Like eat.
Hair clippers bought but don't have the foggiest how to use them!!
Sophie-I'm adopted too! Been for genetic testing and wasn't what I expected! They did blood test but he also looked for specific physical markers which may indicate a genetic condition other than that relating to Braca although being tested for those too he entered me into medical research scheme to get testing for everything else for free (because of my age they need the input for research!!) - got appt 18 Feb for results as it takes three months! Makes you wonder what they do with blood for that long!
Re the sensible comment re aspirin, I'm only taking it in the first few days after chemo to reduce microclots in the brain from the debris floating about: as this is straight after the monthly bloods (mine are the day before chemo and my plts can be reviewed then each cycle then I'm happy with that decision.
....Sophie...I'll need your SOH for my second appointment with she-with-the-animals-in-boxes next Tuesday (though hoping my follicles hold in with the caps).
Hi all. Had my bloods and pre-chemo scoring done. Apart from my tingly fingers (which I shouldn't have) and my reactions to the steroids (which don't go on it) just got to wait for my results this afternoon and a time for tomorrow.
The PP forum is changing image slowly...don't adjust your sets. Those poor chilly emoticons are next! And 11am Chat is a daily thing so see anyone there tomorrow (unless I'm in that bit of chemo where I can't type...as the line goes in...TMI:S).
Will read through pages of posts in a bit - just wanted to say missed Perfect Pinks chat as have been to see alternative hair provider lady at the hosp. Now owner of a sweet little hazelnut frosted animal, but can't find any eyes or ears and not quite sure what it would like to eat....
Minny - shop shop SHOP SHOP. What a horrible list to have to make, def. postpone that till post Christmas. (Hugs).
I'll be getting genetic testing as I'm adopted, so have no family medical history, and I'm 41 now, so still (haha)'young' to have bc. When I was dx, the first thing I did was think of my three daughters - and wail - not for me, for them!! Fortunately my consultant accepted my point of view that on the maternal side of family history, my kids are now batting 100% - rather than the nurse's viewpoint that my girls were low risk because I was their only relative with bc. Uh,uh - I am their ONLY relative on the maternal side..full stop! So, I've got to remind them post-chemo, and they'll do the testing then.
Minny - hit the shops! This is not something to do this side of xmas. Good idea to delay it. I've been offered genetic testing too as all the women (back to my great grandmothers have had BC). My mum was the missing link up to 3 weeks ago!
My romantic session on 14 Feb is the Look Good Feel Better workshop - hope I do!!
Thinking of you xx
A phone call this morning from the Genetics clinic. Will i go today??? I'd forgotten about the letter received last week and i haven't fill out the forms that went with it. Short answer was NO. I'm not ready. Didn't want the next appt offered either, only 3 days post FEC3 so made one for Feb 14th. Very romantic.
Feeling down in the dumps now, filling in the dates etc of when all my nearest and dearest died and remembering them all. Bet they'll think i've made a mistake date wise. My sister and brother died 20 days apart. Need cheering up now.. retail therapy i think. x
Morning ladies, get well soon sj, have not been on for a couple of days so loads to catch up on, went to my oh grandaughters play school concert yest, wore marjorie and the first thing she said to me was jules you had your hair cut, 3 years old bless her, so observant and made me smile, been to have bloods taken this morn, onc tom then chemo fri, still got no appetite although not a bad thing!!! dreamnt last night my hair had fallen out but still there when i woke;)hugs to everyone, julie xxx
Thanks Minny! Have reserved some clippers and need to go pick them up later as the pain of the hair moving, even under my wig or sleep hat, is pretty bad so if it's just stubble at least it won't move even though I did go at it with the kitchen scissors and cut it shorter!
SJ-feel better and good luck with onc and drainage!
If i carried out my threat, each and every one of our friends would have been sporting throbbing black eyes! Gosh, i look SOOO well! Okay, so why didn't i feel it? May have something to do with hair missing, wearing a turban type thing and looking like i'm on chemo! Ummm, may have to get used to it or persevere with Betty Bouffant! She still feels far too itchy.
Emma, as soon as my hair was cut, the pulling feeling went. I didn't have long hair, but guess even short hair has some weight.
SJ, hope the sore throat eases and you feel more comfy after draining.
Good luck to those at hospital today. XXX
Good morning all. Sorry you're not well SJ. Get well soon.
To continue the supplement theme - someone on here said something about taking aspirin, but I'd be very wary of that. Chemo commonly causes a low platelet count (platelets are responsible for the blood clotting mechanism to prevent bleeding). Aspirin is anti-platelet so reduces the clotting time, 'thinning the blood', so would increase the risk of bleeding.
Agree with the milk thistle - even though my chemo nurse said 'dont'. But I'm just taking one a day, standard dose. It's all a bit of a minefield isnt it, with everyone getting different advice.Organic honey supposed to be great for the immune system too -but I hate it!
Morning fellow pinkies.
Hope you are all doing well this morning.
SJ - sorry you are feeling crap this morning. Hope you feel better soon. Drains are rubbish but I'm sure you'll feel more comfortable once it's in.
Mel- don't worry about the weight! I tried on my little black dress for the work do this Thursday and I have to say I looked terrible - fastening it was the least of my problems - wonky, swollen boobs, white sports bra mmmm sexy! I can't believe that in the 4 weeks since surgery that I've put on so much weight. If I was dieting I would have lost about 1/2 lb in that time. (actually thinking about it, could it have been all the chocolates, sweets, takeaways I've been eating?) Anyway, IT'S NOT FAIR. I shall take note of Trish's comments and next year we shall all be gorgeous!!!
Chemo to start next Monday so I'm on count down now getting ready for xmas and praying I'll be ok to travel up North 3 days later and that I'll be 'normal'for the kids over xmas.
Anyone recommend good website for wigs? Not sure I want to spend another £200 on this BC lark.
My BCN said they dont allow you to take anything at all when on chemo as they dont know how it will interact with it. Will see what ONC says on thurs. XX
Just to add a little more confustion into the whole multi-vit question, my onc told me not to take any additional multi-vits, although i only specifically asked him about Echinacea...
There's currently studies being done in America to see if actually taking vitamin supplements is harbouring chemo from actually doing its job, as if you take vitamins to protect you this may be stopping the chemo from working, as the chemo needs to penetrate us all for it too work...
Although these studies are in very early stages and no link yet has been made, just thought i'd mention it, i'm certainly no expert and would gladly welcome your advise if you know different to this? Although i have to say it does strangly seem to make sense?
SJ - sorry you're feeling rough this morning. Hope you feel better very soon. Glad about boob draining as I know how uncomfortable it can get.
Milykins - you've just reminded me about the rabbit's Christmas presents!!
Hope you all have a good day
Thanks for the good wishes, just hope it doesn't develop into anything worse!
Just had a call from the bcn, she is fitting me in for draining boob after onc (diff hosp though), so hopefully relief on that front on the way.....
It's a bugger this throat as actually in every other way have feel better than I have done since my op on 4/10, I am getting there...
yukky night courtesy of darling daughter who has rotten cold. 4am - mummy I can't breath - so me with finger up nose of small child trying to extract offending bogies (TMI I know!) - then up again at 5.45 so I ended up getting in with her - she has a double bed cos we intended to buy a new one when we moved so she temporarily went in the double we had kept in her room along with her cot bed once she outgrew that & now we're not moving she has taken up residence in the double!!! - no going back now I think cos she loves it!1!- it is quite nice to be able to sleep with her if she's ill though as at least there's enough room & it's comfy but I think we'll never get her back into a single now she has experienced the joys of the double bed to yourself!!!
off to pets at home to buy guinea pig & cat supplies for christmas
Sj sorry Ure not feeling gd today. Hope it doesn't develop too much.
Bacca stop talking in a foreign language too me! Will get t kids to give me lessons in modern technology.
Mel. Get out there n get shopping. Never mind t weight. I've bought too new dresses in a size that shall never be mentioned! This time next year we will be goddesses. ( never was before but I demand some compensation for all this rubbish we're goin thru. ) .
Have a gd day everyone
Hi good morning everyone
Hope everone is feeling o.k. I am feeling o.k I am just so glad that I haven been sick wih this second Fec that I had last wednesday the Emend tablets seemed to of worked. My next chemo is due on the 29th Dec and I will be going back up to full strenght chemo because they had to reduce it by 20 percent last time because I was so ill.
I have got baldly patches on my skin head and I am missing my long dark brown hair that kepr my ears warm.
I have put on a lot of weight, probably due to the steriods and comfort eating now I feel really uncomfortable and fat!. SOrry just needed to moan.
On a lighter note think I might go out to the shops to have a little look around and get into the christmas mood.
Hi Sj hope your sore throat and cough goes quickly have plenty of hot drinks x
Have woken with a sore throat and yukky cough 😞
Off to see onc this morning before FEC2 and hopefully will get a call about having haematoma drained (v.v. painful now).
Weather foggy and cold - and set to get colder!
Happy Monday everyone, hope you are all feeling tip top, but if not, mega hugs xx
FEC1 day 20...yesterday had a hedgehoggy feeling bit stage right and some hair leaving, today a patch along the top of my head and some falling out too. Rest so far feels normal and just put four medium cold caps in the freezer for Tuesday. Rest hanging on in there so far. Onc nurse reckons on about 20% fall-out doing it her way as protecting all the follicles just isn't possible (with wet conditioned hair) but we only had three caps and the broad beans last time...as one was too small and the petit pois were AWOL.
The milk thistle tabs from Boots (Cynara? brand) are soft lozenge shape (not capsules which I have trouble with..although Emend goes down. They are a little oversized at 300g so a bit of sawing to get them to 250g for three a day while the liver's being pummeled and I took one the night before too.
On Echinacea here too as child 5 getting over the coughy yucky bug just as child 3 seems to be getting it (being the one who never does :S). Child 1 also has it badly but she's at uni...so I feel guilty.
Trish...do get them to show you pleeeeease. The photos are uploadable under the posting box and you just select them off your hard drive as a jpeg file.
Hi girls. Well Uve all been having lots of adventures.
Went out last night to friends for dinner and it was v nice. Managed not to blub. Was very glam with Cheryl my alternative hair on!
Had a little cry today cos hair looks terrible so I wore a little jersey hat when I wasn't wearing Cheryl. Was like an Amish person. Was waiting for Harrison ford to turn up but he let me down again. Son said I was like the Girl with the pearl earring so felt better.
Tree up and lights in working order so far. Not telling Julie where I live in case she pops round and fuses them.
Made a lovely lamb roast.
Just ordered new wig off tinternet. Only £35. Bargain.
Popping into work tomorrow and Tues for a few hours. Don't want to overdo it.
Seems like lots of us have treatment this week. I'm Friday with SJ and Millikins I think.
Some of u are sooner than that i know.
Have to have lessons for t perfect pink site. Haven't t first clue bout photos etc. Will have to get t teenagers to show me.
Forgot I went to church today n someone said my hair was lovely. I said it wasn't real. Poor woman felt really bad cos she hadn't heard that I wasn't well. Should have broken it to her more gently. Someone else came up to say hello n that they hadn't seen me for ages n was I ok. Welled up and couldn't speak. Not normally like that. Oh well. Will say nite nite girls. Trish xxxx
Hi SJ - sorry and forget I said anything!
Sorry also to Julie about lights! Hope you get some working soon!
I am going to dye my hair VERY blonde tomorrow - like marylin blonde - cos if it's coming out anyhow it's going in style ( or trashy chav ness depending on your viewpoint!!!) Am planning to keep it til Christmas for the rest of my family then get clippers out when it starts going or New year's eve depending on when is soonest. I will have ceremonial goodbye courtesy of OH & take a few pics which I may unashamedly post in perfect pinks.
Em - I hope I haven't scared you to death with my PICC story - I just wanted to be honest & for me even though it wasn't nice to say the least I still view it as the lesser of 2 evils & would do it again (though not if I had a choice of course!) - My arm does ache but they warned me it would so al keeping an eye on it as I can't believe it is meant to hurt fo rthe 5 months it will be in so assume that will pass once the bruising settles.
we just spent an hour getting sophie's pressies down from the loft for me to wrap tomorrow - she has far too much cos I forget what I already bought but this year I really don't care - she's getting the lot!!!
ang I remember when sophie was that age - you can't turn your back for a minute - I caught her carrying our cat under it's arms one time & she was almost as big as her - so funny but I just shouted nooooo! - the cat seemed non plussed though - such a lovely wonderful stage - savour every moment
My sparkly lights are still in the loft, so no idea whether they will work or not!!
In our house tree only goes up weekend before Xmas...
OK you lot stop bragging about youre sparkely lights will you ha ha x my daughter came in today and has a head cold and cough and she said "mam have you ever had that feeling where even youre hair follicles hurt" yes i said but i hope you dont have the same as me cos mine fell out shortly after ha ha xx
Was advised not to shave, and having it clippered to a no 1, was not painful but uncomfortable.
Wig is fine - but uncomfortable scalp makes it feel strange...... can't really describe.....
Not having PICC, as although veins crap FEC1 went OK, just have to get my hand very, very warm!!
OMG am avoiding X factor as been out to dinner with parents and it is on my first thing to watch tomorrow morning!!! No spoilers please!!! Lol!
SJ-haven't shaved mine but been wearing gorgeous comfy wig for over a week now and love it! Thunk I want to shave it but have no clippers and now it really hurts worried about how much shaving will hurt-but equally can't continue with hair everywhere-my bath plug definitely cant take it!!! Ho hum it's a conundrum! I'm perversely looking forward to Friday too-1/3rd of the way through-go us 🙂 PICC line Thursday though and read the horror stories so fingers crossed!
Nottsgirl - I got milk thistle capsules from a local herbalist store but have had it before in a kind of tincture that you add to hot water.
LIF - that sounds fantastic that your meal was home produced. I'm going to be working on our veg growing next year. Unfortunately no room for pigs, sheep or chickens!
Feeling Christmassy too with the tree up and sparkling lights about everywhere. My little girl was mesmerised by the tree but I think it won't be long before she starts taking all the decorations off! I'm definitely not going to put presents under there like I normally do until Christmas eve as I know she'll definitely be ripping them all open when I turn my back. She's at that 'into everything' stage!!
SuzyB - that's fantastic about your boss. As you say there are some lovely people out there - not least all you lovely ladies on here. My 2 sons are really wanting to do something like that too. Last year they cycled the south downs way (which is 100 miles) aged 8 and 10 to raise money for a friend's cousin aged 10 who had a rare brain tumor and had to have treatment in America (fortunately doing well now). They are equally wanting to do something again now.
Sarah - x factor good but I wanted Rebecca to win!
Hugs and love to everyone
No tips but even having had all hair cut off and a no 1, scalp feels sensitive and prickly...... hey ho, just something else relatively low key, that just makes me feel less than 100%!
I'm with you Millykins - roll on Friday......don't want to have it but the sooner it gets here, the sooner it's over!
Hi all! Day 16 post FEC1 and hair is well and truly going on a mass exodus! I'm prepared for it but blimey it hurts!!! Like when you have your hair in a really tight ponytail and then the roots feel all sore-any tips for minimising this? Going to have a proper catch up with the thread this week as have been super busy with puppy and christmas parties but quiet week ahead-hope all are well and sending big hugs! Xxx
why are ginger nuts so moreish? it's not fair - I can't stop munching them.
I see my drs copy letters but it just looks funny to see them writing about me?- I can't associate the letter with myself somehow.
I will get some milk thistle. My nurse was adament I talk to the ONC about multivits - I don't hink they like you having anything they don't know about but it makes sense cos just because they are "natural" doesn't mean they are safe to take
I just want Friday to hurry up & come now cos I find waiting so hard when I know something is going to happen shortly
Hi all hope you have all had good weekend. Julie you poor girl with those lights-what a nightmare!!! Also julie thats interesting what you said re grading.
Jo i havent seen path report but would like to. I asked for a copy of what theyre gonna send to GP and will ask for any reports the ONC sends to GP. The more i know the better but not everyone is like that.
Love to all you lovely girls.
Well done lif...living life full on! I feel like iv'e been walking, socialising, ancooking all weekend but its been great.x
Can I ask if anyone has had mouth thrush. my mouth is sore and tried difflam stuff but wondering if thrush. no white spots but a bit coated like...
ps had glass of proscecco Friday - first drink since fec1 and this tasted ok day9
Am going to start taking this as I have looked it up and think its a very good idea!
Flippin busy day today....cooked huge lunch for everyone including eldest son and his partner who came over for the day. We had roast pork, cabbage and roast potatoes, squash, marrow and parsnips....the only thing not home produced was the potatoes so I was very pleased and it was soooo yummy!
Marzipaned xmas cake did half of britains washing...well it felt like it! and hoovered a bit....
Got such a busy week....4,000 pieces of wool insulation for meat boxes to get out this week! If you are having a Christmas turkey or meatbox from Riverford Orgainics this year you will find out what I do!!!!
Sarah - yep cider still tastes the same but this was 12 days after FEC and I doubt I could have stomached it before.
Bacca I might try milk thistle (not for the cider!) but after the last lot of FEC the only thing I could drink the first few days was plain water. Are these tablets though?
@Sarah...because there's enough evidence that it protects the liver from damage (and the liver is well-overloaded metabolising the cocktails of chemo drugs in the couple of days following treatment) for me to think it worthwhile (my first degree was Pharmacology so wading through the papers is doable..). Some people "abuse" it for a heavy night out as it also protects against alcohol to an extent...but that's a voluntary abuse - ours really isn't an option! And my onc nurse was keen...they go on courses at Bristol so are pretty openminded with sensible alternatives.
Well today appears to have been a quiet day on here - perhaps we are all getting on with our lives or maybe the fear of being labelled "aholics" has scared us all off!!!
Bacca - I know it's been mentioned before but can't remember - what is the milk thistle supposed to do for you?
sazzie - I am sure your decs are very tasteful and not at all gawdy - having laughed at those over decced houses in the past I now really want to do that when we eventually move & get really sparkeled out for christmas
suzy that's fab about your boss - I agree that you do find out how lovely people can be & that despite our more synical apporach to life these days when it comes down to it most people are actually very nice & caring about eachother
I braved sophie's second panto this afternoon after ducking out last fri. It wasn't too bad but I still can't stand them having spent 12 years working in the theatre & seeing umpteen of them many times I just cannot enjoy them but am glad I went for her - she did get upset that she didn't get to go on stage - drama queen in the making I think.
I wore my pink PICC sleeve cover out (fashioned from an old pink top) & no one batted an eye lid so that was good.
hope everyone had a good weekend. I plan to make the most of the week ahead before D day or rather FEC day 1 friday
Just back from a spa break with a friend - booked before I stupidly didn't know that us BC lot can't go swimming, jacuzzi-ing and the like, d'oh!
It was nice anyway, my alcohol capacity is sadly way down, but sat in hotel bedroom watching Strictly as my friend guzzled the Sauv Blanc and snoozed off before 9pm, oh yes, I know how to show myself a wild time these days!
My boss at work is doing a run for Cancer Research and I'll put the link on here tomorrow - it's some mega mountain solo thing which sounds nigh on impossible to me but he assures me he can do it; I'm highly impressed both at the fact he's doing it and the fact that he's only known me since Sept but is doing this....the world is actually full of lovely people 🙂
Hugs to all baldies and alternative hair afficionados...I'm actually loving my new straight haired look but keep forgetting to brush it as the real hair never got such treatment!
Well i feel very christmasy today, have bought and put up the tree (i love the smell of the pine when i walk into the room) and gone the whole hog and bought outside twinkles and 2 raindeer for our garage roof (all very tasteful i must add) 😛
SJ- I love guiness too and drank it throughout my 2 pregnancies, (umm i wonder why they were both nearly 10lbs!!) and have just opened a bottle of red, almost 3 weeks post tax1 and it almosts tastes normal - throught the mouth ulcers that is!
Minny - hope you had a nice lunch.
Bacca - why do you take Milk Thistle tablets?
Nottsgal - i too love pear cider does it still taste nice with chemo?
Im im just cooking roast pork for the family, i feel really well at the moment and am braving it at work next week, so i'll let you all know how it goes.
X-factor final tonight whoo whoo!
Love to everyone
Sitting here with wig on to get used to it, as I am happy bald at home. Scalp sensitive already, wig not helping......but okish.
Son has decided to shave his hair off too, asked me to do it and I just burst into tears.......so his dad is going to do it for him. Daft b****r I am!!
Hope everyone enjoying Sunday, sun gone now - really cold outside now 😞
Just off out to lunch with 20 of our friends. They'll all get to see me hairless for the first time. Will be wearing a turban though. Wig still a bit itchy to wear all afternoon. Taking bets as to how many will say how well i look!! Shall i practice my left hook before i leave the house?
Enjoy your afternoon as best you can, XX
**Stop press...stop press...on Perfect Pinks Shoutbox at 11ish in the morning M-F as everyone trying to use it keeps missing each other and until I can improve it. Please drop in if you can around then for some quick fire chat on absolutely anything** (and if you're new here and want to join us please mail me for a link).
Hope you can see the who's online at the bottom of the page. Still worried that there may be tech issues with handhelds and reading posts??
Tasteful quantities of hair coming out today. Trying to re-arrange "alt hair" woman for 21st as the only time they seem to have gaps are chemo days. Wail :S
Yes, SJ...week 3 everything tastes normal again...(bearing in mind that I had had no sense of smell for months before chemo 1 so the effects after chemo were probably more odd or me than for most...including OH smelling like an old wino on one glass of wine...poor chap. Not fair after what I'm putting him through!
Had a pint of Guinness last Sunday (FEC1 + 9) - really enjoyed it but like when I was pregnant, alcohol doesn't appeal as much as usual......
Hope everyone having a good Sunday
I had a can of Magners last night with chile con carnage and no ill effect but tomorrow I'll be 2 weeks post-Fec 1, so maybe the effect has worn off a bit. Certainly couldn't have drunk anything the first week.
good luck for round 2, I'm on round 3 tues too.
Know what you mean about the alcohol, just doesn't taste right...although discovered champagne still tastes great!!
Bug higs and happy thoughts to all on this sunny morning!