Hi Buds,
Hope all settling down with the SEs and hair. Mine is stubbly and dropping out whenever i run hand over head. Positive thing is that when I wear WIG I have had a few people who don’t know say they like my hair cut!!/
Merc I had message to say you want to be my friend but I followed the link and nothing happened. What should I do next as I do want to be your friend on the site(sounds like we are at school doesn’t it!!).
Love XX
Hi to all, just had call from wig lady, app is next Thursday, Merc I also had message from u, I also followed link but it doesn’t go anywhere, so I clicked on ur name on the post and added u there, don’t know if it’s worked :-/ Em hope ur throat is ok, I’m feeling better today, eating a lot better too, and had a cup of coffee earlier, first one since Monday, it was great, hope u all have a great weekend
Hi Buds,
Hope everyone is doing OK especially those of you coping with hair loss and SEs. The “out of body” feeling of the first few days is exactly what I experienced - however it does go away and I am sort of back in my body now.
Em - sounds like good news re your metal widget if they think your cancer will shrink so much they might not be able to find it when they operate!
Merc - I think I accepted your friend request, it may have sent you a blank message from me, I wasn’t being rude, just don’t know what I’m doing!
I have had a bit of a today - it seems all of you are getting all your appointments set up for wigs, widgets, PICC lines, next chemo etc. whereas I have heard nothing. I am an obsessive control freak and have to know exactly what is happening at all times so have been waking up in the night (despite cider and sleeping pills) with dark thoughts that I have been deleted from the system or they have decided not to continue with my treatment.
My breast care nurse said I was meant to be having Herceptin but I did not get it at my first chemo and they did not seem to know that I was meant to be having it let alone when it was meant to start. They said they would speak to the Onc re the herceptin and get back to me but never did, and half the time they don’t answer the phone. Then Onc nurse said the breast care nurse should have arranged my wig appointment but breast care nurse said this was the responsibility of the onc people. Onc people also said they had written out and booked a schedule of all my chemo and wig appointments and would send it to me but this was over a week ago, so I think my next chemo is 31 May but have not had this confirmed. Today I got a letter for an Onc appointment - under “type of appointment” it said “FUp”, which I am hoping means “follow up” rather than the naughty word thing! All this may be one of the problems of the multidisciplinary team approach - everyone thinks its someone elses job to do things. Or it may be just that my hospital likes to leave things to the last minute to make everyone’s cancer journey that much more exciting by keeping people in suspense!
On the positive side, I was taking painkillers for my breast (inflammatory breast cancer, not yet had surgery, so aches and pains from the cancer itself) before chemo but have not needed to since, so am hoping this is a small sign that the chemo is starting to do its stuff!
Sorry about the whinge, hugs to everyone and hope everyone has a good weekend.
Squeakymouse xx
Hi Ladies.
I am having my Picc line put in on weds and chemo starts on Thursday.
On average, how long after the first session does hair start to fall out? I have bought my first scarf. I tried it on and promptly burst in to tears. It’s going to take some getting used to
Hope those of you feeling sick are feeling better today xx
Hi Ladies.
I am having my Picc line put in on weds and chemo starts on Thursday.
On average, how long after the first session does hair start to fall out? I have bought my first scarf. I tried it on and promptly burst in to tears. It’s going to take some getting used to
Hope those of you feeling sick are feeling better today xx
Hi josiejo. I think it depends on what chemo you are having. Mine started to fall out on day 13 amd shaved it all off last night day 17.I am having docetaxel. I have to say the falling out bit was sad but now its gone its really fine. My dad has just phoned to say how lovely he thinks i look! None of my friends have been shocked or upset so that has been fine. Hope that is a help xxx
Squeaky mouse, u certainly r going thru uncertainties right now, I’ve had no probs with onc etc, which is just as well cos I like to know when things r gonna happen, maybe u should ring oncs secretary and c if she can help, the nurses should have known about the Hep, it must be so infuriating, I do hope u can get it all sorted, gentle hugs
Hi josiejo, I’m just a week a head of you, first FEC was tuesday so will keep you updated. Have just dyed my hair bright red lol. Figured only two weeks left? I’m usually very conservative. I’m sure you will look beautiful in a scarf. Lots of women with hair look stylish and sophisicated with scarves. Am hoping I don’t look too pirate like!!
Oooo arrrrr…
We’ll get through it x x x
Hi Guys,
In response to all the ‘friends’ queries - I have no idea ! I thought I would
try it out to see how it works. But saying that, I feel that all of you are
helping me through these times and hope this is what it was meant for???
Ambarose - it comes up that u have accepted, so I guess it worked, even if you
it doesn’t say anything your end.
My damned scalp is sooooo sore - and in places there are clumps coming out. I
am due to have my 2nd FEC’ing on Tuesday, so I think I will struggle of till
then, and then I will bite the bullet! Barbara the Blonde Bombshell (my wig) is
chomping at the bit to make an appearance, so I will give her an outing tomorrow
(OH & 2 youngest daughters going to Shrek the stage show) to see how she
behaves in public. There wont be anyone I know so we will see if they all point
and stare and chant “wig, wig, wig” as I walk past!
Doggirl - Sounds like you have FEC’ing ‘chemo brain’ or ‘brain fog’. Mine has
diminished this week, but am due to start it all again.
Rattles - I usually try to keep it upbeat, but your honesty about how you
feel about the hair loss has really struck a chord with me, and I want to do the
same. Everyone keeps saying to me " you knew it was going to happen!" Well you
know what? YES I DID HEAR & READ THAT I WOULD LOOSE MY HAIR - BUT THAT
DOESNT MEAN I UNDERSTOOD WHAT IT WOULD MEAN TO ME AND THAT I AM OK WITH IT !
The last few days I have felt so low - it’s like loosing every last bit of
femininity that I had. I now have one breast, no hair, and if the chemo doesn’t
do it, the hormone treatment will send me into early menopause. I’m trying to
find a bra (or should I describe it as chest armour) that will help with truncal
lymphoedema as I prepare to wear a full sleeve for the rest of my days too. I
have never had a great deal of self confidence, but how can I even kid myself
there is anything remotely ‘attractive’ about me now? I feel like an android.
Hmmmmm - ok - self indulgant rant over !
Let’s enjoy the weekend girlies - what do you all have planned?
Luv Merc xxxx
Merc- I soooo understand how you feel. Friends and family keep saying how good it is that I’ve had my hair cut to get ready for it coming out but I’M NOT READY AT ALL and I don’t feel ready for the menopause either which will also happen ( I’m 47). I too will need lymph nodes removed and a mx and I know if is all to get rid of the dreaded cancer but it is such a high price to pay and I hate the thought I’ll never be the same again - I quite liked the old me and it’s the old me my family loved. Sorry not to be more 'positive '(!) but sometimes can’t do anymore b*****y positive!!! Your not alone sweetheart, Em Xxx
AND I’m constipated!!! Dulce lax is rubbish- Hahaha. my rant over now. Fix on smile, deep breath, weekend here I come…
Em and Merc, u both r ahead of me ( excuse the pun) I’ve still got my hair, for the mo anyway, will be seeing wig lady next week, I must admit a lot of people say, You knew it was gonna happen, whether it be feeling like s**t, or loosing ur hair, well I’m sorry but it’s not as straight forward as that , so many emotions, u’ve had ur hair pretty much all ur life, then it gets taken away from u, :-((, I wonder have these WELL meaning ppl would cope with it, sounds harsh I know, but it gets u like that :-/ . Em have u tried prunes? I’ve been ok, no constipation or diarrhoea but I’ve got a tin in the cupboard, just in case lol. Oh gonna throw this question out there, has anyone’s nipples been painful? Mine have been arghhhhhh, don’t touch them :-D, ok well I hope u all have a great weekend, if u’ve got the sun, enjoy it,we’ve got drizzly rain, yuck, hugs to all who r not feeling to good :-)) x Toni x
Em, Merc and Rattles - thanks for sharing your feelings about the loss of hair and breasts - I haven’t lost either yet but am dreading it, but thought everyone else was coping and I should just pull myself together and get on with it. I had long blonde hair (which I had cut short a few weeks ago) and large boobs so will definately feel like I am losing my identity as a woman. I am OK with the menopause as I thought it had already started, but it turns out my period problems were due to fibroids.
I think some of the anti-nausea meds can cause constipation, also if you are eating differently to usual because of the chemo. I only had it mildly, but managed it with prune juice, prunes, other high fibre stuff and drinking loads of water. So …er… good luck to anyone suffering.
I decided if nothng comes through the mail about my appointments over the weekend I am going round to the hospital to sort it out on Monday. If I turn up there in person they can’t fob me off with “its in the post” or “someone will call you back”. Particularly if I shed a few hairs over their desk. They also have a drop-in centre where you can buy hats and scarves and get advice on wigs, and I might call in to a wig shop while I’m in town. I doubt I will be able to sort out the herceptin thing until I see the Onc though.
Off to Bowood House to do the rhododendron walk - have a nice weekend everyone!
Squeakymouse xx
Hello Buddies,
It is great that there is so many of us, but hard to keep track (with a chemo brain) of everyone, so I am thinking of you all.
The good news (for me) is that I am feeling better. I hate that pressure to feel positive, usually I am, but sometimes you just gotta get that umbrella out and wait for the rain to pass, as the saying goes.
Bikerchic - you sound better? Can’t help you with the nipples as mine are numb just now. Sorry!
Em- I can help with the constipation- you need LAXIDO aka Movicol and prune juice! I promise it works. I had several boxes in readiness for this particular SE but found that carboplatin causes d…ea bringing with it a whole different set of challenges. Any problems getting it, will post my supply to you!!!
Merc - sending you a big hug. It is hard and it would be insane to go through this experience without feeling emotional pain. You have so much to cope with and you are allowed to rant, cry and feel sorry for yourself. My strategy is ‘treats’- the worse I feel, the more I treat myself and my family(not so great for the bank balance, but hey, worry about that later!) so when I heard I had a new breast cancer we ordered take-away! Slightly strange, I know, but works for me.
I have called my wig Velma- because it looks like Velma from Scooby Doo. I know this because my four year old watches Scooby Doo. I wish it looked like Daphne’s hair-style but sadly I am much more Velma than Daphne with baggy jumpers and sensible shoes! My surgeon was delighted with the results of my reconstructed (.) (.) but my left one looks more (^) than (.) and it really hurts as its had rads. On the otherhand, my right (.) could easily go on page 3 (but I am Velma remember). If you read Caitlin Moran, she refers to her (.) (.) as Simon and Garfunkel and she hasnt even had breast cancer… It is very funny. Might cheer you up.
A funny story to end (ps I am trying REALLY hard to be funny and I am not funny person (Velma remember): yesterday in the morning, head hair falling out in handfuls. Didnt want OH or daughter to know so put LOADS in the loo. Thought I flushed the chain (maybe not…) A bit later daughter comes in and says ’ Someone in this house has a hairy bottom!’ ‘Its you Daddy isnt it?’ ‘I just had to do a wee on all this hair in the toilet. It was disgusting.’ I looked a sheepish, but was able to say in all honesty’ Well,it isnt me!’
Thanks for indulging me buddies.
Rattles, xxx
Ladies,
Thank you so much for your support. I had been keeping it up beat on here thinking it was the right thing to do,but as you gals have pointed out, sometimes it can make us feel worse thinking that everyone else is coping - so why don’t we feel like that? What is ‘copimg’ anyway?
Well I have a bit of a headache and feel queasy today. Do so hope I’m not coming down with bug rest of family had. Would I still be FEC’ed if unwell? Still gotta get glad rags on - got a box at the Apollo for family evening out tonight, so I better be ok !
Not had the bunged up problem, but was given senna and Movicol when in hospital and it was thought I may be. If I was, don’t think I ever will be again !
Hugs to all,
Merc xxxx
Love it Rattles! You rock !
Hi all
After first chemo on Wednesday, I am still feeling ok (I don’t want to sound smug I am just worried it is all going to come back to haunt me tomorrow when I come off the steroids).
Any wig advice? Has any one got a monofilament one? I hadn’t even looked at those then the hairdresser at the hospital threw these ones at me so totally confused now. Brain is fogging at the moment without trying to make any decisions like this.
Bikerchic, yep I have the sensitive nipple thing going on too. Not all the time but on and off, usually when I am standing in front of someone talking to them and have the urge to do something about it! Most embarassing.
Alesha
Rattles u make me laugh,what with Velma and hairy bottom, I was crying I was laughing so much, .'-D
Alesha I’m so glad I’m not the only one with the nipple prob, lol,
What is going on with us all. this morning i was at the pits of dispair even though i had a whole nights sleep thanks to my wonderful friend coming to look after Elizabeth for the night. I was awake early with a cold head paniking about my next treatment. Just dont think i can go through it again. Will talk to onc on tues as i must weigh a stone less than when they weighed me (4 days after having baby) and i think they calc your treatment based on how much you weigh. I now feel ok again. Its such a roller coaster. Sending love to those who are struggling and feeling grotty. On the up side my dogs have come home for the weekend. 2 x crazy beagles = no time to feel sad xxxx