hi rebecca
wasn’t going to post anything for a while but I am feeling so LOW at the moment. Hair has starting to go!!! Just a little round the back of my neck.It’s awlful you know it’s going to happen but when it starts-blrrrrr!!!
Not just that,heard from the hospital today my line is being fitted on the 11th June.I was hoping earlier than that.It means my next chemo,which should have been the 5th is now the 19th.Two whole weeks later.I wanted to be nearly on my third cycle!!!
My poor son,he had a friend round when I was dealing with this and I was crying.He was lovely,put his arm around me to cheer me up-even in front of his mate! -at 13 I couldn’t ask for more! My mum phoned too as I was sobbing and come to visit.The op is on the same day as she moves house-my dad passed away about 9 years ago so I wanted to be there to help!!
I feel so fed up! I’m ranting now!!! To add to everything else my BC called.I haven’t spoken to her since just after my op.When I told her about my hair she said “oh well at least when it’s gone it’s alot less hassle clearing up the hair off your pillow eah day!!!” She probably didn’t mean it quite like it sounded but what!!! Don’t worry about my low self esteem or anxiety-ehh?
GRRRRRR! Anyway I really hope you do get to lounge and have a couple of glasses at the weekend -cheers to you! I might even raise a glass (of fizzy water) to you myself.
lots of love
Jen x (sorry about the ranting!)
ps mouthwash from hosp was green and tasted blr.I bought cherry m/wash from Boots- Dentyn ice cherry)
Hi Jennie,
I hope you don’t mind me joining this thread. We spoke at the chemo unit; you were having your first and I was having my last, do you remember? I’ve been wondering how you’re getting on. I’m sorry to hear about the problems with your line and that your next chemo will delayed. I don’t blame you for having a rant!
How’s half term going? The weather’s been appalling hasn’t it, ugh. My eldest (16) is supposed to be revising for his GCSE’s but he seems to spend most of his time on the internet or the Playstation.
I’m finding this week very stressful as I have my appointment with the surgeon on Monday to find out what surgery I’ll be having. I think the waiting and the uncertainty is the worst part of it. I had my first proper haircut in 8 months today; it’s a kind of pixie crop. If I’d had this haircut last year I would have come home and cried but now I’m just grateful to have some hair.
I really hope that you’ll start to feel a bit better over the next few days and that your energy levels will improve.
You take care and I hope to hear from you soon.
Keep the faith. LizaRad. xx
Hi Jennie
Oh, as LizaRad says, you deserve a rant! Poor you. It’s true that everything comes at once. Hopefully next week you may feel a bit better once you have digested this delay. Your son sounds like such a sweetie. In a weird way all this may make him a stronger person too I think.
I know what you mean about maybe not posting for a while, but at the moment I find coming on this quite comforting.
Well, if your hair has started, guess mine may too very soon. At least when it starts to fall out I will feel that the chemo is doing what it is supposed to (ie killing every sodding cell in our bodies!).
Well, at least your BC calls! I am not sure if mine is still on call, as it were…
I will raise a glass to you, even though it probably won’t taste as good as it used to .
Lots of love
Rebeccaxx
Message to LizaRad - forgot to say - wow, your hair sounds as if it has grown back fast!! Sounds very reassuring to me, who is just about to lose it all!
Rebecca
xx
Hi Rebecca,
I’m sorry you’re at the stage where you’re about to lose your hair, I know how upsetting it is. I used the cold cap during my 8 chemos (4xAC and 4xTaxotere) and I was lucky that it did save a fine covering of hair. It looked a bit like a bird’s nest after the AC but it stabilised when I was on the Tax and yes, almost 3 weeks after finishing treatment I was able to have a proper trim today.
I did wear a wig sometimes and bought a couple of baker-boy hats from Monsoon which I have worn a lot. Are you in Essex too? I got my wig from Studio 9 in Southend; they have lots of styles to choose from and the staff were really helpful.
Take care. LizaRad xx
Hi girls,
I’ve been laid low this week with a cold, perfect timing for half term not! Still have a bit of a sore throat, but am getting better. I have blood tests on Monday, but don’t know if I will make the magic number for me to have chemo next Thursday. I can see them delaying it a week, which will mean that I will then be due chemo first week of July and two days before son’s sixth birthday party.
Sorry about the hair loss girls, it is very difficult I know. I still don’t have my NHS wigs so it is a good job I bought a cheapy off the internet. The NHS ordered them, they took six weeks to arrive and when they came (they ordered three for me to choose from) they were all completely the wrong colour - unless you like bright red! I had requested a dark brown - so I wasn’t very happy about that. Apparently it will now take a further three weeks for the correct colour to come. We shall see, I wasn’t impressed I think we have enough to deal with without mess ups like this. I am just so grateful that I had the foresight to sort something out myself.
aahhh! thanks for all your comments it really cheers me up!
Lizarad - I am so glad you joined this thread! I did look for you but couldn’t find any of your threads.
Well you know how I’m getting on- half term blrrrr! Not much happening here.Mums about to move so stayed at hers with the kids for a couple of days to help pack.Thats about it really- my husband took Friday off thinking we would do something but the kids weren’t bothered so thought oh well might aswell leave it!
I’m off to get a wig this afternoon.I’m going to Studio 9 too.I’ll let you know how I get on.Not looking forward to it really.But a friend is coming with me and I know she will give me an honest opinion.
ttfn! Jennie xx
meg - good to hear from you sorry your feeling a bit poorly.You never know they might not delay things.But I know what you mean! I’m going to miss a wedding reception this month because of treatment and a couple of birthday celebrations too! But as my son says “this time next year …” and no his name isn’t Delboy!!!
Hi girls
Back from weekend away, which was OK, but awful food and the children were very unimpressed with the entertainment (only reason we went!!!). And, my hair was falling out constantly. I have a lot of hair, so you can’t notice but I am very close to phoning my hairdresser who said she would come and shave it off. Jenn, hope you got on at Studio 9. They were really friendly I thought and had a good selection. Must say, I am absolutely dreading the first time I have to go out in mine. Don’t know why - I didn’t think I would feel like this.
Hope you are all feeling OK at the moment. Meg, hope your son’s party is somewhere you don’t really have to do anything apart from pay! My son is 5 in July and he insisted on having his in the Whacky Warehouse, and I didn’t even try and steer him towards something else this year!
Lots of love
Rebeccaxxxx
Well my blood count was OK yesterday, so I am off for chemo on Thursday, but I’ve been told that I need a blood transfusion between this chemo and the next one as I am anaemic. Not too sure what I think about this…
hiya!
Well I’m sorry to hear the weekend wasn’t that good-maybe a change is as good as a rest???
I HAVE MY WIG! I am really pleased with it and the lady in Studio 9 was lovely and very patient.I’ve worn it every time I 've bben out since and had quite a few comments saying how nice my hair is!! It was great until my 6 year old daughter told her teacher in the middle of the playground “its a wig” -from the mouths of babes!!! Although I don’t really mind I am so impressed with it.Sorted it just in time too-my hair is a mess and my head is so itchy I really don’t know if I want to shave it off yet!!!
Had my pre assessment for my line to be fitted today,the surgeon was lovely.He did worry me though when he asked if I had been screened for MRSA!!! As I haven’t he is treating me with kit gloves and I have special cream to stick up my nose before the op.!!
Rebecca - when is your next chemo? Mine is now booked for the 19th - should have been nearly my 3rd cycle but hey! I’ve been trying to plan everything even bought pressies for the teachers for end of year.My daughters birthday is the 8th July and I still don’t know what to do.Last year I had 15 children in the garden- NEVER again!
meg- keep your chin up - you never know things might change in between and they say no to a bllod transfusion but just tablets. Is this your third? How many sessions have you got to have? Everytime you go its another session struck off -be strong xxx
speak soon Jennie xxx
Hi girls!
Hey Jennie, get you going out already in your wig - well done! My hair still looks normal but is coming out in clumps and I have pencilled in going to have it all off at my hairdressers tomorrow evening. I am panicking about wearing a wig for the first time, but Jenn, you have inspired me! Yes, children do provide the classic quotes don’t they! What is your response to people saying how nice your hair is? Is your ‘situation’ common knowledge in the playground? I thought mine was restricted to my close pals, but it is a small world, and other people seem to know I hear on the grapevine.
My next chemo is Friday (if my bloods are OK…), so must remember to take the steroids on Thursday… sort of dreading all the tabs, injections etc but on the other hand, another one over.
Meg, why not give you tabs I wonder? I had a transfusion about a day after my mast and recon and was very confused! They just hooked it on and I wasn’t too sure why! Always thought you had one when on the slab as it were.
Right, off to itch my head and pull out some more hair. Nice…
Bye
Rebecca xxxx
Hi Jennie & Rebecca
Glad you both sound positive. Am I right in saying you have bought your own wigs. Was that choice or do your hospital trust not provide them, or were theirs just not very nice?
Polly
Hi Polly
Yes, I bought 2! I have always been paranoid about my hair as it is wild naturally so have always had good cuts, and styled it and I look awful if scarves! So, even though I begrudge the money I spent, it will be important to me even though I dread wearing them… I am being treated privately through husband’s work scheme so don’t even have the NHS voucher scheme which they seem to operate round here - they give you a voucher for an amount which you then have deducted by the wig shop I think.
I was feeling a bit down yesterday as I made the mistake of just looking through some other threads and they made me very depressed! Think will stick to this one. Hope you are OK?
Rebecca
xx
Hi girls, the only reason why I think I’m having a transfusion is because I have had the runs almost constantly since starting chemo, and they get worse if I eat meat. I’m Ok with processed meat and have a craving for pork pies a couple of days after chemo, but any proper meat upsets my stomach. I presume that this is why I am low in iron, so perhaps they think I won’t absorb the iron tablets either; oncologist has tried and failed to sort stomach problem out so I have to just get on with it, although I did have two infections after my mastectomy, so perhaps they think enough is enough. Also school mums found out today about my cancer via friend of a friend telling mum of child in son’s class, even though I’d asked her not too, also told her confidential info re son which I was really annoyed about. Friend has had breast cancer herself and should know better as school were very keen other parents didn’t know as they or their children might say things to son that he didn’t understand and he might get upset (he’s only five so has a limited understanding of seriousness); and my friend knew this !!!
hi girls!
well wig situ is going well! The only problem is that I still have my own hair(just) and when wearing it my head is soooo itchy. I think I will probably shave it off now it’s becoming unbearable and there is hair everywhere- I am constantly sweeping and hoovering! I’ve taken to wearing scarves indoors.My head is alot cooler of course and I’m occassionally getting the shivers-it’s a strange feeling.
I only bought one wig,I found it quite emotionally draining but I am going back soon to get another one - I’m a brunette but thinking of going blonde-lol!!! I dd have a NHS voucher,pleased I did too the wig was about £200 without,although at the end of the day my hubby said cost doesn’t matter as long as I am happy and my self esteem (which has been very low through this) is ok.
Polly - don’t know where you live but I went to Studio 9 in Southend,they were fantastic,very patient too.It’s at the back of a hairdressers.My wig needed the fringe trimming and a nice young man came and did it-sounds strange but it just felt normal.
Meg- these are times when you really know who your friends are! Although I admit I have been quite open about my situation.If there is anywhere that news can be broadcast quickly its a school playground! My daughter is 6 and I haven’t even mentioned the cancer word thinking I was protecting her but I ordered the Mummy’s Lump book from this website and we read it together.All the things that I thought bothered her didn’t.Now I can tell her that chemotherapy is just strong medicine and she knows that I have breast cancer- I recommend it! Good luck this time too x
Rebecca - well? are you topless? Go for it and wear that wig with pride. I’ve just bought a lovely floppy summer hat from M&S aswell,would just like Myleene Klass’ figure now! Don’t forget your Steroids today and I hope it goes well for you tomorrow- sounds ridiculous but I’m envious as you’ll be on no3 when I’ve just had no 2! I know it’s not a race but I just want to get this over and done with-grrrrr!
well speak soon -got to go and shout at my son now as he is banned from the computer for being cheeky and I know he’s ignoring it! Well all’s normal here??? hmmm…Jen xxx
Hi girls
Well, first wig outing today and my pals rallied round big time. Walked to school with one and a few others who know about me but didn’t even realise - just thought I had had a posh hairdo! I even kept it on at home to get used to it. Did have mine cut very short, but wig wasn’t bothering me so kept it on for a bit. Yes, my two both cost £200 each but it will be money well spent. Can’t go on nice holidays this year, so we’ll be better off in the long run! Got a statement today from our medical insurers for Chemo session 1. Couldn’t believe it - nearly £4,000!!!
Polly - Studio 9 is really good and I was also very impressed with Suzis in Lakeside.
Meg - poor you. People just can’t keep their gobs shut can they. As Jennie says the playground is rife with gossip and even though I know my close pals haven’t told anyone, other people have found out via other Chelmsford folk within my husband’s family and school friends. I did mention the cancer word to mine (my son also nearly 5 and reasonably oblivious bless him), as my mother in law died of lung cancer last summer and a school mum died within 4 months of diagnosis (not BC!!) so I needed to explain to my daughter that not everyone dies from cancer. Mummy’s Lump is brilliant - I have told my chemo nurses about it and I think they are going to order some in.
Jennie - yes, remembered the steroids and have been eating ALL DAY. Funny, I also bought a floppy hat from Accessorize (and I hate hats as they look awful on me!). Yes, Mylene’s figure wouldn’t go amiss. Bet she would look OK bald… Hey, as for the chemo, after the next one, as long as you look after yourself it should all go according to plan - it’s ‘only’ another 3 weeks, which I know at times will feel like an eternity. Bizzarely I am quite looking forward to tomorrow as should be relaxing - no school run and no telling off children who have been SO naughty today. If you are in town, perhaps we can meet in town for a coffee some time (or a Green Tea…) if you feel like a cancer chat!
Right, off to bed now and will decide which nice head gear to wear to stop my hair going all over the pillow…
Night night
Rebecca xxx
hi all!
thought I would just say hello and see how everyone is. I’m getting a bit nervy about Wednesday and having my line fitted.My lovely sister in law is coming to stay overnight as I have to be in hospital for 7.30,she is taking the kids to school for me-bless!
How’s the wigs going? I wore mine today while shopping and I could not stop itching-where it so warm! I bought a couple of lovely scarves in Hennes today,so as soon as I got home I whipped off the wig and changed-lovely.Although indoors I’m topless(lol!) but I’ve asked my family to remind me when I go out to put something on my head!!
Rebecca - would be lovely to have a cuppa,don’t know when but I’m sure in the near future we’ll arrange something.I popped in to see the reconstruction nurses last week and they have told me they are arranging a Ladies lunch in November,they are sending invites out soon-so watch out!
I’ve just been told my aunt has breast cancer and is having a lumpectomy today,when I phoned to wish her well, her daughter told me she is doing a charity walk next year along the Great Wall of China in aid of BC.It was all arranged before the diagnosis so now is quite apt-strange world!
Anyway I’m waffling speak soon,hope all is well Jen x
Hi
Good luck Jenn for tomorrow. Like you say, strange world isn’t it. That sounds like a trip and a half - would love to do something adventurous like that when this is all over.
Glad you have nice scarves - I do too but I look bloody awful in them!
I have a ‘sort of’ period after Chemo 2. Not happy as I was hoping they would stop - isn’t the chemo supposed to stop me feeling like a woman in every respect??? Bitter, moi??
Hope everyone OK
Rebecca
xxx
hiya
what a day I feel like ****! Had the line fited yesterday and I can’t move my neck properly as it pulls a bit! I’m very sore and bruised.The staff again were lovely.When lying in the theatre,I asked if I could keep my little towelling cap on as I’ve lost my hair and I started to weep-the anaesthitist (I could never spell!) pulled off his hat and said “I’ve lost mine too” and then he wiped the tears away for me-isn’t that lovely.
I’ve found with scarves it’s all in the tying.I’ve got a couple of bandanas that I wear at home but I’ve also bought 2 large square scarves from Hennes.I just wrap them round and use one of my daughters scrunchies to tie it.I still don’t have perfect use in my right arm so it’s easier than tying a knot.I went out Monday shopping wearing my wig-it was so warm I just scratched all morning-yuck!
As for periods-well I had mine first time so I don’t know if alot of my aching joints were water retention or chemo.It’s going to happen again this time round as there has been a delay-I was just hoping it was going to be one less thing on my shopping list!!! Still crave chocolate middle of the month but that could be for any reason!!! lol!
Hope you are bearing up this time.Are you doing the granocyte injections or is a district nurse coming out? Our last chemo was around the half term so no school runs,have you got help this time?
Well I’'ll say good night as I need something to help with this pain in the neck-literal of course although football is on so it could be my hubbie too : - )
Jen xx
Jennie, I hope that your neck feels better soon, it must be so annoying for you, but I think you have been incredibly brave to have the line fitted. I’m off for my blood transfusion on Monday, I’ll let you know how it goes.