I've got curly wurly frizzy hair too. And can't say that I'm looking my best at the moment!! Especially as I've got greys peeking through my roots as well BUT still persevering as I'll be able to style it a couple of months after finishing chemo if it holds on that long! Fingers crossed!
Thanks for the reasurance Sandytoes. My hair looks a real mess this morning, I normally style it a little and add some products to it to try and control it. My profile photo is the back view of me wearing my wig. My natural hair is quite curly. My OH said my hair looked relaxed and sexy - which is more than I do!! Oh well, one day at a time.
Hardly any sleep last night, must be the steroids plus still got some tenderness from the SNB. New Iphone should arrive today so that will be a distraction of some kind. Banana eaten (potassium levels in blood low apparently), anti sickness and steroids taken (tick) Everyone who works has gone to work and the house is quiet again so I will write up my diary then try and sleep for an hour.
District nurse coming today to do the white cell booster jab between 3:30 and 5:30pm. Nothing else planned for the day.
Hugs and positive thinking to all of you xx
Sure you'll be fine for the first round - this is when your hair's strongest. And if you just rinsed it off and left it then I'm sure it wont be a problem.
Yeah - I just noticed the baby shampoo thing. I've been using Simple, but had bought some really nice smelling baby shampoo. Oh well!!
Too late was the cry! I rinsed it off my hair and then just left it. Didn't even comb it. Hope I haven't fallen at the first fence with the cold cap. Time will tell. I have just read the paxman leaflet and the advise against baby shampoo too. Doh......that is what I had bought. Guess I need to go shopping again.
Hello ST! One down! Well done!
Just a quicky - the advice is not to wash hair for 24 hours after using the cold cap. There's details here on the Paxman leaflet: http://www.paxman-coolers.co.uk/wp-content/uploads/2011/04/patient-haircare.pdf.
My hospital actually reccommend 48 hours, which I've done. Greasy! But I just stick a headscarf on for a couple of days.
Good that you met someone for whom it worked. It seems a bit of a mixed bag on the forum - but I'm keeping my fingers crossed!!
Got back from my first chemo (EC) - I gave the cold cap a go and I must say that if you can stick it out for the first 10 minutes then you will be fine. I got talking to a girl who had finished chemo after using the cap and she had a fine head of hair so I think its got to be worth a try.
The chemo nurses were lovely, wimbledon was on the tv, plenty of mags and papers around.
I had a cannula fitted into the back of my hand then a drip attached, she injected steroids and an anti sickness drug before taking me over to have the cold cap fitted. Half an hour with that on my head and then they injected the chemo drugs. Painless, no side effects so far. That bit took about 30 mins but then had to keep the cold cap on for a further hour and a half. So if you aren't having cold cap treatment you could be in an out within 40 minutes.
Come home with steroid tablets to be taken over the next 4 days, anti sickness over the next 2 days and some other anti sickness to be taken when needed. Also got stuff for the injection that the district nurses will do tomorrow that will boost white cells to be released - and also got the blood paperwork for when the nurses do the pre chemo blood test 3 days before the next session.
Going to wash the conditioner out of my hair now and get something to eat. Good luck everyone who is waiting to have their first chemo.
I had my pre chemo appointment last week and a tour of the department. The specialist nurse was very nice and explained everything and asked if I had any questions. I was given a red chemo treatment book where they will write down what I have been given and I have to circle any side effects and how severe they are. I was shown round "the ballroom" which is where the treatments are done. Very spacious and light room with lots of windows. I have asked for the scalp cooling in the hope that I will be able to hold onto some of my hair. They showed me the hats which look a bit like cycling helmets, these attach to the machine that circulates very cold fluid through the cap. I will give it a go although I don't like the idea of being in the room for a long time because of it.
I was also given a credit card sized "alert" card, which you use if you have to go for any type of treatment (i think) it alerts people to the fact you are undergoing chemotherapy.
The veins in the back of my hand were also looked at and apparently appear to be good.
I think I am starting with a cold so I am taking my temperature regularly and will ring the unit in the morning to check if I am still okay to start. My appointment is at 1:45 and I will come back and do a full report on how it went and how I feel in between treatments.
Hugs to everyone (((((((HUGS))))))))
Just had the phone call confirming I start chemo next Thurs (30th June) I knew it was coming but oh dear I am sitting here trying to take it in.
Thanks for your tips Crazylesley - and any more that anyone has would be really appreciated.
There's a thread for us who have started in June if you want to come and join us as we're already chatting about side effects and supporting each other. We all dip into each others threads anyway to help each other out, but the June thread is full of ladies who've already had their first treatment. Including ladies with children. Here's the link: http://www.breastcancercare.org.uk/forum/viewtopic.php?f=25&t=31563&p=550711#p550711
I have already started chemo but would love to join this thread as i havnt really had anyone to talk to. I have grade 1 stage 3 and had mx and node clearance, only just found this site and would really like to support and be supported, im married with 3 children and trying to protect them from all this, will be great to have somewhere to chat with others going through the same horrible thing. best wishes marika x
Hi july ladies, just wonted to tell you that having chemo is awful but it is doable. I started mine in march after WLE & SNB with clear margins & nodes, but because I am only 51(fell older most of the time), I would be having 6 FEC then 15 rads. That information just passed me by for quite a few weeks, while everyone under the sun told me have brave I was!!. Today I finish my last fec & if I can give you all any advice it would be listen to your bodies, I over did it on the first one, rest when you need to, take as much help as is offered, drink lots & lots before & straight after chemo & I found eating litttle & often really hrlps keep the sickness at bay. Also if you are struggling witth any se ask for something to help, there is usually something that they can give you to help. Another thing I would say to do when you are feeling ok is book yourselves on a Look Good Feel Better course, its free & you get any amazing free goodie bay full of expensive products.I wish you all the very bst, you will all get through it xx
This is my first posting on here and Supertrouper I know exactly what you mean. I am 56yrs old, married with 2 kids (26 and 21) no grandkids, and I am not coping at all. I have TN grade 3 carcinoma and had a mastectomy 20th May, just waiting for my pre-assessment for chemo now which should be next week, to be followed by radiotherapy.
The whole thing seems so unreal and I just cannot talk to people about it - only my OH and a GF know exactly what I have. I can cope with the practical stuff like getting a wig fitted and buying stuff in advance - but every now and again the whole reality of my situation just overwhelms me.
So yes coping one day at a time is what we have to do - thanks for being so positive.
I am jumping in here a little early because I have my first Chemo on Monday 27th of June.
I have invasive lobular carcinoma with 5 out of 5 lymph nodes testing positive. I am 55 and we celebrated our silver wedding last year. 3 kids - youngest is 21 - 2 grandchildren boy of 7 girl who will be 3 next month.
I have my pre chemo assessment at the hospital tomorrow - will let you know how that goes. I have picked a wig, got some scarves and everyone is telling me how well I am coping and how organised I am.
The truth is that I don't feel I am coping at all. It all seems dream like. As if I will wake up soon and everything will be as it was 6 weeks ago.
Anyway - I just wanted to jump in and say hi - and as I step up to the plate with my first chemo at the end of June - perhaps I can hold the torch up for the rest of you to follow.
We can make it through this - my thoughts at the moment are that I can can cope with this one day at a time. All that matters is right now. And I can cope with now.
I am sending out massive hugs and positive thoughts to all of you who are going through this horrible horrible time.
Hi there I lost this thread, but glad I have found you all again.
Oh Shroomie, your post has made me feel very sad for you, I can't even begin to imagine how scared you must be at the thought of chemo, it was the one thing that filled me with terror. I am sending you a huge hug and really hope you manage to keep your hair. A friend of mine used the cold cap and her hair thinned out a bit but she still had alot of it and I certainly didnt notice any difference. Really glad you had a nice time in Rome, I hope you feel better for the break.
Hi bumbles, I have been told that because my nodes were clear and it was grade two chemo would be an over treatment. But the same nurse who said that, also questioned why I wanted a bilateral mastectomy, telling me quite frankly that my cancer could come back as a secondary in the future somewhere else!!! Nice nurse eh! Did you have your hair done. I must admit, before I knew I wasnt having chemo, I kept not rebooking to have my colour done as felt I would be tempting fate, daft I know. Really glad todays experience at the chemo ward helped, its amazing how strong the human spirit can be.
Lisha I hope you enjoy your holiday and come back feeling refreshed. Congrats on your silver wedding, mine is next March! I am off for a few days myself before my operation next Friday. Two days in warwickshire and then two days in Wales, back monday night and then off to the Marsden on Friday for my next lumpectomy.
Oh Penny wish I could give you a huge cuddle. Your right it's nice to be able to talk to others who know exactly how you feel we are all with you x. Hopefully this might help, I had a real positive experience today I visited the Haven as I walked in I felt out of place being one of the only ladies with any hair, looking around scared me seeing what was in store, But do you know what I left there feeling great. The ladies were fantastic examples of how to get through chemo they were so lovely giving me tips and advise. They shared there success with me and gave me confidence that I can cope and get through this as I am sure you can do to.
Have you thought of booking a treatment there? Honest it really helped me.
Glad you had a nice time in Rome x
Sharon enjoy your holiday I will keep my fingers crossed you get some fantastic weather x
Take care all. Love Adele x
Sending a great big hug. I know exactly wahat you mean though ,i truly keep thinking shall i go through with it but knowing deep down there is no choice. We have to give ourselves all the chances we can.
Im not as far on as you yet but am absolutely dreading it so we can go through this together along with the other july ladies and support each other x
I have this week and next and have been told to relax and have a great time ,like you we are going away on sat to isle of man and i know when we come back it will be straight into my oncologist app the monday morn 4 july .
I intend to enjoy our hol its been booked for a year for our silver wedding.
Hope you had a great time and made the most of your time in rome too.
When i get back i will come on here to see how you are doing ,think you will just be a week before me as my appointment should have been 29th and was put back for my hol.
Just keep coming on here and we will all support each other through it .
Didnt realise we were supposed to give our real names though we used our user names on here so better come clean ,
Take good care of yourself love Sharon xx
Hi all, having a very emotional day today 😞 have been in to see the chemo nurse this morning to go through side effects and to give me start dates. I'm in next wednesday for pre chemo, (blood tests, ecg and chest xray then in friday for the chemo.I'm hoping i've got the holiday blues as have just got back from a long weekend away in Rome. All i keep doing is crying ;-( i have been so close to saying no to treatment. I have decided to give the cold cap a try though.
My concert was for next Sunday so i am having to cancel. I know i don't know if i'm going to suffer any side effects but don't really want the pressure of having to go if i'm not really up for it.
I hope all of you are well, and not suffering too much in this roller coaster ride we are all on.
It is nice to be able to feel i can put my worries and upsets on here with you all knowing where i'm coming from.
Will be in touch very soon.
Love to all
Hi, great results lisha glad your happy ( well as can be ) Regarding time between op and treatment mine will be exactly 7 weeks, oncologist said it's ok up to 8 weeks after but then I suppose it's maybe individual and depends on circumstances.
Your son sounds like he had a great attitude towards your hair loss kids are great arnt they they kinda keep you grounded if you know what I mean!
Penny I feel better now I know my date although the 6th seems such a long way away I just want to get on with it now. I really hope you enjoy your weekend away and fingers crossed you get to the concert, I was gutted I missed Take That I had just had op so couldn't go!
Well going to the hair dressers today to have my colour done my hair is such a mess because since dx I have done nothing with it I kept telling myself it was a waste of money if it was all going to fall out. Decided to be positive and told myself the cold cap will work so better sort my hair out cos to be honest grade 1 would look better than it does now!
Take care all Adele x
hi Bumbles, How do you feel now you have a date set? I still feel really strange not knowing exactly when they are going to start mine, have app next wed. Good luck with the wig hunting, i'm dreading actually going out and trying them on 😞
Good news on the clear margins and lymph nodes Lisha 🙂 Was one of my fears when waiting for the results.
About the waiting between op and chemo, i think they can be pretty leneant on when to start. As i had my oncologist app on 9th, he has booked me in to see the ward, nurses and go through side effects on the 22nd, i think he would have had me in sooner than that but did tell him i'm having a long weekend away this weekend. I'm hoping i can delay it until the 5th July as have a concert too on the 3rd but not sure if they will leave it that long. Although he said i'd probably be fine for the first treatment and go but i just don't know until it happens.
I really need to kind of know my start date now so i can start preparing myself , wig, bandana's, medicines etc 😞
Lisha your son seems to be coping quite well with the hair loss, mine are still finding it quite hard to get around. Although my 11 year old son has tried and said how cool it would be to gel and spike my hair when it starts growing, bless em eh 🙂
Right best get to bed, lots to do tomorrow 🙂
Take care girlies, love penny xxx
Hi everyone,had my appointment today with the breast clinic.My results were very similar to yours bumbles.
I have a grade 3 stage 2 tumour . Had to push for information. My margins were clear and no lymph nodes affected HOORAY . I have been sent down the chemo road too as aggressive and i am only 42. I dont have much info as i go to see my onchologist on 4 july. would have been june 29 but am going away to the isle of man for our silver wedding.They said that a few days either wouldnt matter .Panicked abit about what to do wether to cancel my hol or noy but they said dont.
Would be really interested to know how long everybody else has waited between op and chemo.Think mine be starting about july 14 or roundabout .Really pleased we all have this to help us get through our tough times. Im sure it will make it a bit more bearable.
I am going for a wig fitting next thur before we go away. I know like everyone else i am gonna hate loosing my hair but my son very kindly said i will probably have a style better than i do now!!!!!!
Take care july girls. Speak soon Lisha xx
Hi all, well had a call from the hospital today to confirm my chemo EC1 Of 6 starts 6/7. So Went wig shopping today with a good friend she liked a couple but all I could see was WIG so didn't come home with one, gona try again next week but not sure if I will ever like one??
Hope your all ok.
Hi Penny, its such an upsetting time I'm all over the place, my family and friends are great but until you have to go through this yourself no one really knows what it's like. Keep your chin up I'm with you all the way x
It's amazing all the different thoughts on the cold cap you just have to decide what's best for you. I asked about the risks and was assured cos my nodes were clear and the cancer was not near my head it was very safe. I too have thick hair and after speaking to a friend who had bc a few years ago she only lost about 30% of her hair so I'm gona try ( if I can stand the feeling of a frozen head!) I will let you know how i get on.
Well physio tomorrow think that's just to check I have full movement back after op then hopefully a few hospital fee days until chemo starts. I will let you know my def start date one confirmed.
Love Adele x
Hi Bumbles, my day been ok i suppose, been upset a few times with people asking how oncologist went 😞
I haven't ordered any bandana's yet but yes they are very reasonably priced and quite pretty. I had my heart set on using a cold cap but my oncologist said it really wasn't worth the hassle as it only works 50% and said that i would suffer terrible headaches. Also speaking to an bc adviser the other day she opened my eyes to the fact that the cold cap area will be the only area where it wouldn't be treated with chemo! It is worth thinking about! Although still breaking my heart that i'm going to lose my shoulder length hair 😞 shouldn't be so vain i know but still upsets me!
I'll know for definate on 22nd my start date so we will probably be going through this together xxx
Hi hope everyone's having an 'OK' day.
Penny- thanks for recommending 'annabandana' site I have just ordered a couple of head scalves thought I had
better start getting prepared even though I hate the thought of wearing one!
Wig fitting wednesday and dentist fri for a clean up , start chemo either 20/6 or 4/7 just awaiting the nurse to ring me to confirm. Must say they have been great cos they are trying to fit starting EC1 around my holiday we are due to go to Devon last week in July with the kids ideally working it so it falls on week 3 so might be at my best!
Going to try cold cap are you?
Lisa- Hope you get good results on the 15th I will be thinking of you. And fingers crossed you get to go away for your wedding aniv.
Laura- really sorry your having to go this this dreadful situation again best of luck with your treatment.
La Prainere- hi glad you have joined us x so sorry to hear how sick you were hope thinks are better for Fec2.
So glad you liked your wig it's good to know people can be happy with how they look. I have a wig fitting on Wednesday I will let you know how I get on.
SGL- welcome, just wanted to say hope your op on the 1st goes well and fingers crossed you don't need chemo, is it def you don't need it or does it depend on your results?
Take care all , Adele x
SLG- welcome, hope you op on the 1st goes well. Has your consultant said def no chemo or does it depend on your results? Best of luck let u's know how you get on x
Awww SGL, thats so sweet of you, would be lovely to have some support 🙂
I can understand your worries about not having chemo, even though i'm sooooo scared, i think i would be worried also if they hadn't offered me it like yourself.
I'm away this weekend too so like yourself i'm going to make the most of it 🙂
Back at work today and finding it hard to concentrate and telling a few colleagues my next step they seem to get upset which then upsets me. Just need to get on really until i need the time off as will only get 4 months full sick pay.
Big hugs for you too sgl, talk soon
Love penny xxxx
I am not bad thanks hun. I did have a conversation with the bcn that kinda worried me on Monday, but trying to put it to the back of my mind.
I am so sorry you have to have chemo, it must be so scary. I keep seeing ladies with the same diagnosis and age as me who are having it, but I am not! dont get me wrong I dont want it, but it kinda makes me wonder if i am putting myself at risk by not having it.
I have my next lot of surgery on the 1st of July, but have two weekends away before hand so gong to make the most of them.
Even though I am not having chemo, if I am allowed I would like to come and see how you are doing and join in.
More hugs coming your way.
Hey SGL, hows you? I have been bit shell shocked since seeing oncologist on 9th June 😞 i always knew that i would probably have to have chemo but once the oncologist actually said it would be in my best interests and then told me my regime it kinda hit me. Although telling me what lovely hair i had didn't help 😞 Thanks for my hugs SGL xxx
Hi La prainiere, Be great to have you on our July group 🙂
Really sorry to hear how sick you was, how awful for you. As for the wig thing i'm beginning to understand that the NHS does work differently in different areas. Will have to ask the nurses on the 22nd and find out what i'm entitled to as will definately want a couple of wigs and bandana's to hand. Really not looking forward to the first time i see myself in the mirror with no hair 😞 hoping your 2nd fec goes a lot better than the first, will be thinking of you xx
I hope you don't mind if I join your July group as although I had my first (of 6) fec mid may my 2nd (9/6/11) has been defered one week due to low neutrofils, not sure really what that means, not a great start as I vomited violently 5 hours after and missed the window for anti-sickness, I blame the onc nurse whom told me not to start my anti-sickenss until later that evening, but of course I'd already begun being sick and continued for 12 hours!! This time they're going to give me something stronger...anyway I was diagnosed Feb with stage 1 grade 2 idc, with clear margins (phew). Regarding wigs, my onc unit referred me to the wig clinic...what a hoot I had!! You get one free on the NHS, they were really lovely, I wasn't going to bother just use head scarves etc.. but after going and being fitted they all looked so natural and I found one like my original hair..as I've 2 young children I don't want to scare them!! So if I were you I'd ask to be referred...and hopefully its not postcode lottery!!! I'm in Lancaster... good luck to you all!!!
awww shroomie, been looking for you and not seen you online for a while, sorry to hear your starting chemo next month.
Big hugs. xxxx
For you July girls with long hair, can I put in a plug for a great charity that uses donated hair to make wigs for UK children who lose their hair, mainly through chemo. Little Princess Trust is the charity, take a look at http://www.littleprincesses.org.uk.
If you have hair that's 10 inches or longer, you can donate it. I cut my long plait before I started chemo, and my lovely daughter also had her beautiful hair cut short, and raised nearly £4000 for Cancer Research UK, so if you're thinking of doing it or anyone else wants to do the same, it's a great way to raise money for your chosen charity. (We also had a cake sale at her school and raised £163 for BCC, so that was good too.)
Hi Lisha, Good luck for the 15th, fingers crossed for you for no more surgery. Will be great to have each other to moan, laugh, and cry with, its going to be a hard few months but i'm sure with many of us sharing the same experiences we can get each other through this 🙂
Hi Laura, sorry to hear you've got sec to lungs, i hope treatment going ok for you at the moment and thankyou for advice.
Hi Bumbles, Will be great to have each other to share this very tough road we have ahead of us. With the Gi Jane thing i totally understand what your saying, i'm finding it hard to make an effort with my hair at the moment 😞 if i make it look nice then i realise how horrible it'll be not having it. On that note though i have made an effort and looked into wigs and bandana's and must admit i have found a couple of really good sites. wigbank is an excellent site with some lovely wigs, the most expensive is £40 which is very reasonable. I am going to order one tomorrow. And for some lovely and reasonable priced bandana's then maybe have a look at annabandana 🙂
When do you start Chemo Bumbles? I saw my oncologist 9th June, i'm now waiting to see the docs and nurses on 22nd June to give me an exact date which i'm hoping will be after 5th July as i have a concert to go to on the 3rd.
Hope to hear from you all soon,
Take care, Penny xxx
Hi all I would love to join you. I'm 39 was diagnosed with DCIS and invasive grade 2 late April. I have had a wide local excision and sentinol node biopsy mid May. I have been lucky my margins were clear as were my lymph nodes but due to the tumor been more aggressive and bigger than initially thought and my age they have advised me chemo will greatly improve my chances of the dreaded C not returning. I'm the same so scared of my hair falling out, it's always been so long and thick I'm know for my 'lovely hair' not sure I will feel like me with Gi Jane style!. I have read a lot of the May posts and learnt alot from those strong ladies who started chemo in May hopefully us July ladies can support each other too.
Take Care, Adele x
Hi all I'm 47 tn with now sec to lungs I have had 2 wigs now one I got from trendco who was v gd and now this one at my local hos I know if u are on any type of benefit u don't have to pay other than that I'm unsure gd luck Laura
Hi ,i am 42 and i was diagnosed with breast cancer on 11th may and had my op on 31st.
I have my appointment on wed 15th to see if my margins have been cleared and to see if my lymph glands were clear.Ido know that i will have to have chemo as like you i have a grade 3 and i am young(apparently two factors i have been told for having chemo).
I would love to join your thread as i know one way or the other my chemo will start in july.Either i will need another op which will delay me till july or( i am hoping i dont) we have a holiday booked in the isle of man for our silver wedding at the end of june and i am hoping we will be allowed to go.
I have contacted a wig shop (internet wigs .com )and they said if you are a cancer sufferer you get the vat knocked off as it is seen as a nessesity. Hope that has been some help to you .
Take care xx
Thanks to a couple of girls on here for suggesting my new subject title to get the best support and advice.
I'm 36, triple negative aggressive grade 3. Have had op and now waiting for chemo Fec x6 and rads.
Like i said before mine and my children's biggest worry is losing my hair 😞 was wondering if any of you had any help with costs for wigs etc?
Would be great to share my journey with some of you starting at the same time.