Hi geewhiz,
I had a phonecall from a rather posh hairdressers in our local town to say that they’d had a referral from the hospital for me to go and have a wig fitted.What they didn’t tell me was that the NHS will only pay up to 100.00 towards it, and if i chose something more expensive i would have to pay the difference. Not a problem, but i think i may just be a hat person, and am a little reluctant to pay nearly another 100.00 for something i may only wear a couple of times!
You sound if you had great fun choosing yours, maybe i’ll travel further afield and see if i can find a shop where i can try on LOADS before i buy one - the hairdressers had very limited amounts to try and so hard to choosse from a book without having tried it on first!!!
Will let you know what happens,
Louise x
Hi All, Well I bit the bullet and have had hair cut really short. The last day or two it’s been coming out all over the place so it was time. I explained to the lovely girl in the hairdressers that, as all my hair would be gone in a week or so, I just wanted a short crop all over. But she didn’t want to cut it as short as I asked! So, I am nearly £30 poorer (no shampoo or blowdry) and have v. short hair at the back and about 2" long sides and front! Plus side is it took me 2 mins to wash and 1 min to dry! Feel quite anxious about the oncology appt and chemo Thursday but I know what to expect so not sure why. Does anyone else feel like they’re on an emotional rollercoaster - sometimes I feel perfectly ‘normal’ and ok then other times I can bearly speak to anyone. It’s the pits. While I was ‘being sheared’ my lovely daughter popped in Smiths and bought me Maeve Binchys latest book so that was lovely.
Oh well, hope u r all doing well and lets get this week over with.
love Pat x
Hi cass141,
My first chemo appt is Thursday - I’m really nervous! Is my hair gonna suddenly get up and go or is it going in bits and what else is going to happen???
How many chemo appts have u had so far?
I had a WHsmiths voucher for Crimble so treated myself to two of my favourite authors books - very good ones as well when you wide awake at 4.00 am in the morning! even the dog was snoring!!!
AAAAAARRGGHHHHHHHHHHHHHHH
Louise x
P.S : I cry at the most inoportune moments!!! at almost ANYTHING!
Hi Louise, Pat and all,
So pleased to read that I am not the only one freaked by all this! Good luck with all the appointments this week-I am still waiting for my first onc app and dreading it! Have been ok over hols but now that everyone is getting ready to go back to work and I’m not, I’m feeling really low. In fact today I have lurched from being teary at nothing to feeling sick with panic, and although OH is being really good and doing anything I ask him, (which makes a change!!), I can’t really explain how petrified I am at the thought of chemo. He (and my friends!) think that as I have come through before (I had surgery for a gynae cancer this time 3 years ago) that I am strong and will cope with this but chemo is new territory.
Like you Pat I intend to get my hair cropped but haven’t made up my mind about trying the cold cap, so watch this space!! Spent an hour last night looking at a sight which has heaps of hats and other head covers for “chemo heads”. Not ordered any yet but that is an option. On a lighter note was in town today having a coffee in M&S and saw a man with a REALLY bad wig and thought I would rather go naked than that!! Anyone know anything about ordering real hair wigs on ebay?
Anyway, off to try and get some sleep tonight-have taken a little tablet to see if that will help-I am ever hopeful!
Nite nite Lyn xx
Hi all.
Well dinners prepared for tomorrow, done masses of ironing for school and OH shirts for the next week, till ironing lady brings the rest back. Just leaves me to take my sleeping tablet and hopefully will wake up bright and early for tomorrows first lot of chemo. If I’m feeling OK will let you know how the cold hat etc is tomorrow.
Daughters just told me dog(labrador ) has just eaten a plate full of smoked salmon and prawns, guess he might be up tonight!!!
Anyway ,nite nite.
Alison
Hi Lyn and Alison,
Well, my little ones all ready for back to school Monday morning,the holiday went so fast or was it just because i was at home this time which is highly unusual as i would normall be working fulltime.
I took off to bed and started sleeping well, but guess what…I woke up at 1.10am!!! aargghhhhhhhhhhhhhhhhhhh!
Lyn, we sound like we have something in common. I had cervical cancer in 2001, full hysterectomy and all lymph nodes removed but no other treatment - chemo is scaring me senseless. I just don’t know hat to expect!
I’m sure we will all cope, as we seem to do.
As for wigs on ebay, i haven’t had any experience with that at all, I think i may be a ‘hat’ person myself - i like you have seen some really awful ones on other people, and it sort of puts me off!!!
Alison, my best friends dog ( also a labrador) eat all the chocoltae coins she bought for the kids for Christmas - all 9 packets of them!!!
She spent a very happy Saturday night in the vets with him having his stomach pumped!!! £200.00 later…( he eat all the packaging as well!!!)
Oh,and did the Dr give you the sleeping tabs on request? I need to do something here as no sleep is driving me bonkers!
Anyway, sending you lots of hugs for Monday, keep posting and lest us know how you get on,
nite nite,
Louise xxx
Hi Louise and Alison,
Hope all went well today Alison-keep us posted as to how you get on. My girls are back to uni and college this week too, but I should have been back at school as I teach full time, and of course woke bang on 6.45 this morning aaaarrrggghh!
However having taken a tablet last night I did get a much better sleep-I don’t take every night but just when I have had a few bad nights. I asked my GP for one before the last surgery as I know how uptight I get before anaesthetic which she obliged with but when she discovered I still wasn’t sleeping well after she advised taking them and said over a short time I shouldn’t become dependant-and you do need sleep! I feel much better today and the horrible panicky feeling has gone.
I had a vulvectomy and bilateral node removal in January 06 but didn’t need chemo or radio-however it has left me with lymphoedema in both legs which is a constant battle to keep under control, so I am a bit concerned about how chemo might affect that as well as everything else!?
Anyway WHEN this appointment eventually arrives I am going to have a heap of questions to ask- and they will probs think I am a complete pain…!!
PS Zimovane is tablets I got
PPs I don’t have a dog but do have 2 cats and got presented with a beautiful, but very dead, finch yesterday in the hall-one very pleased with himself ginger moggy, who was then unceremoniously turfed outside…!!
Lyn xx
Hi All,
Alison, hope all went well today, let us know how you got on. I dreaded my first one but it wasn’t so bad at all. Louise, I first noticed more hair coming out just a few days ago so I spose that’s about 2 wks post-chemo. I’ve been told it will thin quite a bit first then could come out in clumps - if that happens I may just get my son to shave it, if I’m brave enough! Hair elsewhere seems to have stopped growing and I’m on the way to having a brazilian for free! I bought a wig from Ebay - not real hair but acrylic and it’s fine. It cost about 30 quid and my daughter (who’s nearly 25) said it’s nice and she def. wouldn’t let me outside the door if it didn’t look right. Just need to get it trimmed and thinned out but hard to find a hairdresser who knows how to cut a wig. Has anyone heard of the ‘Look Good, Feel Better’ sessions that run at most hospitals? They’re spose to be good for showing you how to ‘do’ eyebrows and eyelashes and make-up, you are given products as well. It sounds like a couple of hours of pampering which, I must admit sounds wonderful.
Don’t you just love labradors - our one is the naughtiest and greediest and we have had many mishaps when she’s eaten something she shouldn’t have. The vet has very nice holidays on us, the amount of money we spend there! Lyn, could do with one of your bird-catching cats as we have a mouse running around the flat at night!!!
Well, take care all and lots of hugs,
Pat x
Hi Pat and Alison,
well,sleep evaded me again last night - 4.30 i nodded off! just as well i’ve got some good books! My wonderful OH got up at 3.40 and made a cuppa! the dog thought it may be an opportunity to have a sneaky sleep on the bed for 10 mins or so - she’s turned really daft over the last few weeks!
Hope everything went well with you ladies who had first chemo today? Mine is looming ever larger for Thursday and the search for something to cover the old barnett continues!
Pat, i have heard of those lovely feel good sessions at hospitals but unsure if theyre run at every one? My best friends sister is qualified to give aromatherapy, indian head massage ect ect she has also done lots of training at cancer centres providing treatment for such patients and has offered to do something like that for me.Apparently, it can be really good for you.
Lyn, i hope you’ve written down all your questions for when you get your appt? i always think of loads beforehand and when i get there my brain turns to mush! It really helps!!
Pets!!! - our dog tillie, though her bones right out of her pram today as i had to out and was longer than i expected.When i got home she’d piddled on the floor!! Not surprisingly, she ran and hid under the table when she saw me!!!mmmmmm, naughty - but cute!
Pat, hope you catch that mouse - maybe it should have a sleeping pill as well??
Alison, thoughts were with you today xxx
catch up again soon,
Louise xx
Hi all,
Well the first session is over, and although feeling a bit tired all is well.
Arrived for session at 9am,car park like an ice rink… they hadn’t gritted but did so when an old man fell outside the unit.
Had bloods taken and then had chat with chemo nurse, husband sat in as he hadn’t been to appointment with ONC only thing extra I found out was that I can’t eat shellfish or soft cheese due to bacteria problem with low immune, shame cos I love prawn and mango curry andd prawn sarnies also brie and bacon bagels.
Anyway hubbie went off,and I settled to have cool cap fitted, temp -4.5. finally at 11.30 after having drip fitted started with 1 syringe full of anti sickness steroid followed by 1 syringe of ordinary anti sickness, then 3 syringes of epi… red liquid slowly put in along with saline, all finished by 12.30, then sat for a further 2 hours with cold hat, was a bit uncomfortable and of course you can’t even go for a wee. Unit was brilliant, bowls of sweets to nibble on, plenty of cups of tea and coffee, sarnies and crisps for lunch.
Whilst I was there caught one of the BC nurses and at the end of treatment, she sorted out brochures for bras and swimwear so that I can get a filler for the bit they have removed. Found plenty in my tiny size only a 32C.
Came home about 2.45, after a trip round few car garages with my 17yr old. Since then I have been taking anti sickness tablets and this morning started on steroids as well, not even felt sick which is great as I hate feeling sick or being sick. Even got up and woke up the kids at 7am .
Keeping my fingers crossed that I’ll feel this good , although I think it builds up. Next appointment is 21st with ONC followed by bloods on 23rd at doctors then back for next lot on 26th.
Will keep you all updated.
Alison
Hi all!
Louise I definitely will have all my questions written down before this appointment (which I am still waiting for…!). From experience I seem to completely forget everything I have been thinking about as soon as I enter a hospital! Faced with these professionals I turn into a gibbering wreck- and logically I know it’s ridiculous!
Sleeping tablets def worth a try in short term-I took another one last night and slept reasonably well-did wake up but managed to get off again.
Avoiding it tonight but will try a wee wine instead as we are off out for an indian tonight for my birthday-may as well enjoy it while I can! For you ladies that have started chemo, does it affect how everything tastes?
Pat, our hospital runs look good feel good sessions and I have been told to sign up for one as they are very good and you apparently get about £200 worth of goods-sounds good to me! I want to know how to do eyebrows and lashes…I need my mascara!!
Also been for a trim today but not brave enough to go really short yet, but speaking to my hairdresser about wigs so am beginning to come round to the idea and she has said she will style it for me…I suppose it’s all about coming to terms with it?
Good luck Thursday, Louise.
Hugz to all,
Lyn xx
Hi Alison-just missed that one! Sounds encouraging- I hope it keeps going like that and your post has given me a bit more confidence! Think I imagine that I am going to start throwing up while the stuffs going in…LOL!!
Look after yourself and keep posting! Lyn xx
Hi All Glad it went ok Alison, I’m glad you felt okay. I’m getting myself all worked up for 2nd FEC Thursday, don’t know why as I know what to expect and it wasn’t bad first time. Onc has given me something to help me relax but not sure I want to be zombyfied - sorry made that word up, blame the drugs!!! - so will just see how it goes.
Yes, the Look Good, Feel Better sessions are really great by the sounds of it. I phoned yesterday to book and I will be going early April, when chemo finished hopesfully. Its a charity supported by the british cosmetics industry and I’d heard you get great goodie bags which are full-size, not samples. Something to look forward to.
Lyn, I would def phone hospital to chase up appt - I could have missed 2 onc appts had I not phoned as the appts had been made but letters either didn’t arrive or came week after appt! I work at the hospital I’m being treated at - Guys - and I know how it goes. A few weeks ago 6 hospital letters went to my neighbour a few doors away, letters were opened so no secrets there now!
Take care all and lets stay strong and positive - or alternatively we can all go insane together!!! And I have now had TWO mice so I really need a cat!!!
love and hugs Pat x
Hi everyone
I do hope you don’t mind me joining your discussions - have never joined a forum before!
Also like many of you, I’m turning into a night owl
I’ve been following your postings since it started and I’ve been wanting to register for ages and following your latest posting Alison with your update on your first Chemo, this has given me the encouragment I needed!
Just a bit o history - I was diagnosed on 1.12.08, underwent left mastectomy and all 18 lymphs removed on 16th Dec. Tumour was 3cm and Grade 3, all nodes affected.
I am at the stage of first visit with Onc on Friday (9th Jan) to discuss the dreaded Chemo etc.
Just reading your positive and supportive comments is a massive help at the mo whilst we all travel this journey, and talking to each other about our experiences is brilliant!
Many thanks and much strength to you all
Sue x
Hi Sue, Glad you posted, I too took a while before taking the plunge and find the forum really helpful and encouraging. I was dx in Oct 08, had 2.5cm tumour Grade 3, and 10 of 18 lymph nodes removed were affected. Had WLE and now having 3xFEC and 3xTaxotere, 2nd one tomorrow. Am suffering quite badly with anxiety and panic attacks (which were a problem ages ago but have reared ugly head now just when I could do without it)! Everyone has good and bad days and it really is a bit of a rollercoaster ride, but which each of us to support each other we’ll all get thru I’m sure. Once the onc has discussed yr chemo you’ll know what you’ll be having and when and I found that helped. You focus on what needs to be done. Let us know how it all goes.
And to everyone else, hope u r all well. I washed my hair this morning and by what came out expected to be bald!!! But still have lots left, don’t know if that’s a good thing or not. Probably better when it’s all gone so I can move on from this ‘in-between’ part of it. Take care and big hugs to all,
Pat x
Hi Pat
Many thanks for ur response and yes ur right, from what I’ve read so far about all you brave ladies, it’s a bit of an uppy downy journey and it certainly makes you more appreciative of the nicer things in life!
Would it be worth mentioning your panic attacks and anxieties to your GP - maybe he can prescribe some mild ‘happy’ pills short term to help you through this bit. I’ve read somewhere on another thread that this is possible? I hope u get it sorted cos it’s the last thing you need right now.
Have you considered having ur hair cut short? I think that’s my plan of action as mine is quite long and couldn’t bear to see it falling out all over the place!
Do take care everyone and keep strong.
Sue x
H Tillie
I have already had my treatment but if you ever need to chat about anything you can do.
I will always be here for anyone who wants some advise etc.
I was dx in dec 07 with a grade 2 4cm tumour. I had 4xac & 4xtax chemo followed by surgery and then radiotherapy. I am now taking tamoxifen for the next 5 years but they may review it in 2-3 years time.
Again I am alays here to talk to.
Chrissie xxxxxx
Hi Sue, Yes, I had my hair cut really short on Sunday and it’s disappearing fast now. Mine was v long so I had a short bob cut a few wks ago (which everyone including me loved but alas it had to go). Then the crop as it was shedding so fast, thank god for my woolly hat which makes me look like I’m ‘out for the day,’ but who cares? I told Oncologist on Monday about anxiety and panic attacks as I was in such a state even for that appt. She’s prescribed 1mg Lorazepam and she said I can take it just before I leave for the hospital tomorrow. I really hate taking tablets, especially tranquillizers but I’m not gonna be a hero and suffer. I think I’m gonna take half a tablet and see how that goes as I think they’re quite strong. I think because of the hair thing, and then 2nd chemo on top, it just feels very overwhelming again and I can’t not cope as I need the bloody treatment!! Boy am I gonna celebrate when this stuff is over!
Take care, love Pat x
Good evening to all us ladies!!
Well, It’s off to hospital tomorrow first FEC of 6!! mmmm, nervous to say the least! Have done all my chores and will be making a massive chilli for dinner tomorrow night!
We are off to pizza hut now as a treat for our little boy - it may be some time before i feel like pizza again!!
Hope u are all feeling ok today? lovely to have some other ladies joining our chats!, will post again later tonite,
Love Louise xx
Hello everyone!
Pat - you WILL get through this and just you think of that celebration at the end of it all to say a final bogoff to this bloody thing that’s invaded us. The celebration will be all the more sweeter because you’ve been strong and been through a hell of a tough time.
Keep focusing and planning ur celebrations chuck !!!
The very best of luck to you Louise for ur first FEC 2moro - enjoy ur pizza and put some extra garlic in that chilli to ward off the bugs!! Hope all goes well and I’ll be thinking about you. Do let us know how u get on.
My first chat with the onc about my chemo is on Friday, so guess I’ll be starting nex week. Gawd we have to be sooo brave and meet these things head on don’t we?
Thanku Chrissie for the support and the offer of ur experienced ear for us to bend, no doubt you’ll be getting many enquiries from us ‘newbies’ as we go further down the chemo route
Well you lovely ladies as always u take care and good luck again Louise
Sue x