November Newbies 2013

[Poppy66]

Hi Sam
Yes I am , The cold cap wasn't mentioned to me so maybe not available at my hospital
xx

[Nanny_Sal]

Hi Sam

I went to Trendco and they were amazing. The lady that helped me, couldn't of been nicer or more helpful. My wig is long and cost around £200. But I am VERY pleased with it. 🙂 xx

[alabamasam]

Sal, i totally agree with you. I am doing the cold cap but if after the first treatment i find it too hard then i'll stop. I'm not sure if i can bear not washing my hair everyday as i have bad hair days everyday now if it isn't washed so it may be better to just go for a wig. Where did you go for your wig and did you buy an expensive one. I like the idea of a fun wig but in reality i also just want one that looks like my hair does now, i don't really want people to know. I would feel very conscious of it at work
Sam xxxxx

[Nanny_Sal]

Hi Donna

I am due to start the same Chemo as you in the next few weeks. Today I went wig shopping and managed to find a wig that looked like my own hair 🙂 (in fact better than my own! Less grey!!) I also found one a bit shorter and a different colour, which I really liked and I might get at a later date. I think I needed to find something that wouldn't change my appearance too much. I want to feel that when I need to wear it for the first time, people won't take too much notice. Although the other looked nice, I don't think I would be ready for people telling me how nice my hair looks. I just want to stay looking 'normal'.

Can I just reassure you that there are some amazing wigs on the Market. So make time to go and find something you love. I was shocked at how natural they look.

As for cutting hair, I don't think I'll bother. Until it starts coming out! I have decided against the cold cap, because I think i would struggle with not washing or brushing my hair much, during the treatment. Also I would be stressing about whether it was working or not.

So I have now talked myself into seeing this as something that has to happen, so I may as well embrace it. I Know when it happens I will shed a tear. But if having the Chemo stops the cancer coming back, then I am definitely strong enough to give up my hair! I know it won't be easy! But then none of this has been easy. But I am slowly getting through it. As will you and all these other lovely ladies.

Sending you a ((((((((BIG HUG)))))))) remember your not alone. Xxxxx

[Jolou71]

Hello all hope everyone is feeling fine. I was dx on 1 Oct with stage 2 TNBC. I'm 42 married with a daughter 14 and son 12. Due to see surgeon on mon for post op check and pathology result. I'm crossing my fingers that it's confined to the one lymph node we already know about. Been told my chemo will start within 4 weeks of my surgery which was on 22nd so I should be a November Newbie if a bit of a late starter. Been 'lurking' around the boards for a while but decided to take the plunge and say hello. Good luck to all us unwilling passengers on this strange and scary journey.
Love Jo xxxxx

[alabamasam]

Hi Donna, you sound just like me, can you have cold cap treatment ? Maybe it will save your hair, worth giving it a go. I'm having same chemo as you then 4 weeks of the radio. My chemo starts on the 20th. Are you Donna that i've just added to facebook xxxxx

[Poppy66]

Hi everyone,

I was diagnosed on 9th September and it's just been a rollercoaster ride since then.

I had my nodes biopsied that day too just to be safe the consultant said, unfortunately they found cancer there too.

I had my first op on the 27th September where they did a lumpectomy and all my Lymph nodes removed, I The very hardest part was being told (even although I thought I would) being told I would lose my hair. woke up feeling not too good, think the anesthetic didn't agree with me as I was sick with it too.

Never really had pain in my breast apart from it feeling very sensitive to touch, but the arm pain made me feel a bit sorry for myself to be honest.. I had to have second op as they never got enough of a clear margin but at least this op was fine and I got home same day. Breast is still swollen though and I have been told to massage it. Was told they got all the cancer now just all the treatment to stop it coming back.

Have been told that this will start in 2/3 weeks

3 cycles of FEC and then 3 of Docetaxel, then a break and then Radiotherapy and then my Hormone Therapy,

Hardest part of all this was when I was told I would definitely lose my hair, That has been the only time I have got upset. Going to get a wig soon and been advised to have my hair cut short before it starts coming out.

Better stop now as I have waffled long enough but I just wanted to say Good Luck to everyone going through this too

Donna

xxx

[The]

With lumpectomy it was not that painful as no nerves in breast apparently. Try not to worry to much about starting chemo but I know it's hard to switch off. I'm on my 2nd round of FEC day 9 and it has not been as bad as I was expecting. Any side effects you may get they have something to help you with it. Mostly a couple of days feeling queasy but still able to get on with life. Then the next 2 weeks carry on as normal I'm out tonight for a girly night first night out out so life does carry on whilst on chemo Hun xxx

[Maire]

Good luck with chemo girls. I was where you are this time last year. My first chemo was at the end of November so joined the December thread. My advice to you is to take it one day at a time and sometimes one hour at a time! Every minute that ticks by is a minute closer to the finishing line. For me chemo was not as horrific as I imagined it would be and once I had my first round I knew what to expect. I was at my lowest ebb on hogmanay 2012 shortly after my first taxotere and had a wee cry on the couch that night but I had a wee sleep and the moment passed and I knew what to expect next time around.

Don't be too hard on yourself over Christmas and New Year.

I felt I was letting my family down as the New Year dawned but I should've given myself a break!

Once I had my last chemo under my belt I felt ecstatic! It's a great feeling.

All the very best. xxx

[alabamasam]

Hi Helenstevo,
I was DX in August and also stage 2 B
C. I have 2 boys, 14 & 5 and i have already had 2 surgeries. First one was lumpectomy with SNB but one of my nodes was infected so i went back in for more surgery for a full node clearance but luckily all my nodes were clear. I start my chemo on Nov 20th but thanks to all the ladies on these forums i don't feel as nervous as I'm sure i would. I have started a facebook group called November Newbies so if you want to come and join us please do, lots more advice and chatting going on there. If you add me as a friend i can then add you to the group.
Sam xxxx

[alabamasam]

Thanks Barb, it really does help to hear this, i start my chemo on Nov 20th but due to all the advice and stories that i have read i don't feel anyway as nervous as I'm sure i would do. I started a November group on Facebook and I'm also in the October one and yes, this is so helpful and yes we have some great pics on October and the same will happen once our treatments all start for November.
Hope you are ok, we all will be.
Sam xxx

[Barbarella63]

Hi laydees 😊 thought I'd pop in from the Sept stars to let you know we are now all approaching or at the halfway mark, and we are all still here with our sense of humours still in place...just lol, chemo is not the best let's be honest! but you will drag each other through it and if you can still manage to have a bit of a laugh too that is the best medicine of all! We have found the Facebook group to be invaluable, it's sooo much more personal, we have pictures on ours you would not believe!!!!!! We are now firm friends and are planning to meet up when all this is done! My advice is have a wig in place for when the hair starts to go, which most of us have found to be the most traumatic thing of all, take all medicine given ESPECIALLY the anti sickness meds, rest and sofa surf when required ( which is a lot) get some squash in for when the metallic taste kicks in so you can keep your fluid intake up which is vital to flush out the nasties! Don't be afraid to ring your unit if you're the slightest bit concerned that's what they are there for! Make the most of the good days and you will have them, when you feel fine, and go out, treat yourself, see friends have some fun 👍 and above all don't lose sight of the fact that it's not forever and you're doing this for a reason!!! Good luck ladies Barbs xxxxxx

[Tortoisegirl]

Hi, I start my chemo on Thursday I'm having FEC-T 6 rounds. I beleive my cancer is stage 2b and I know I can't have Herceptin as that wouldn't work. Im having my Chemo first. I'm worried about the side effects of Chemo, not loosing my hair but the ones that will hurt. I'm 32 and have a little boy he's 6 and my names Lesley xxxxxxxx

[helenstevo]

Hi i was diagnosed with stage 2 bc. im 32 & a single mum to my 8yr old boy. i have had ny mri which has showed just 1 lump in breast. the biopsy under arm in nodes came back clear but a shadow on the ultrasound made them do a sn biopsy op. which i had tuesday. They stitched inside but glued me on outside as apparantly you heal quicker as they are desperate to start chemo as its grown 6mm in 10 days! I get my snb resulrs thursday & im awaiting an appointment for my pre chemo stuff which i assume is bloods & muga scan?? If my scar has healed by friday they said chemo will start on 11th nov eek. im having fec for 4 sessiins then 1 other drug with herceptin (her2+) for a further 4 sessions. herceptin for a year. they arent sure on number of rads as yet but will have lumpectomy after my 8 lots of chemo & 5yrs of hormone drugs. i am petrified of how ill cope with chemo. im really not sure what to expect. Been told its going to take 3hrs to administer my chemo each time!! I hate needles! Im just getting over my snb op. my scars v sore tight pulling bruised & swollen! God help me with chemo & lumpectomy (altho is this a similar op/ scar to snb)?? Or should i expect worse pain? Sorry lots of questions im such a mardy worrier! Good luck to you all xx

[Nanny_Sal]

Hi all

I spoke with my BCN today. Still haven't been given a start date from Doc!! But she said they normally try and get Chemo started 10-14 days after first appointment with Oncologist. So in theory it could be soon!!

Tomorrow I am off wig shopping. I have an appointment at the shop the hospital recommends. Lady I spoke to sounded really nice. But I am feeling a bit apprehensive about it. Although I am sure I will be okay once I am there. I also ordered some hats/head scarfs online today. I thought it would be best to cover all options, as I don't have a clue which I will prefer.

Hope everyone has a lovely weekend. Anyone got any nice pre Chemo plans?

Hugs to you all.

Sal xx

[Tadpole]

Thanks Janie and Sam, helps to hear sleeping is a problem for others, although I really wish it was not like this for everyone. Exciting morning, going to run a very very deep bath and soak with no worries my anatomy will be suffering, so glad I looked around the site last night. Will keep doing exercises, always harder later in the day, but think I could be a lot older than you youngsters!!!!

[Nanny_Sal]

Hi Janey, Sam and Tadpole

Will let you know, when I know. Would be great if it was the same date! We shall see.

I had node clearance on 1st Oct, and I like Janey am fine now. No pain, no stiffness. I think the trick is to use it as much as you can! I found myself favouring the other arm to do everything. But then realised reaching in the top cupboard for a glass or plate, was a perfect chance to use the arm. So that's what I started doing. The only thing I don't do is carry anything heavy, with that arm!!

I also found massaging the area when in a nice warm bath helped a great deal, especially when I had some cording! Hearing the cord 'snap' was weird! But didn't hurt.

I now use my arm as normal, I have no feeling in the armpit and a slight numb feeling at the back of my arm. But other than that it's fine. I can sleep on it! But now I need to actually start sleeping properly again!! I don't know why, but I am waking at 2.30am at the moment, and I am wide awake!! Could be because it's half term, so I have done less walking with the children, I look after?!

Hope you all have a good day. Xxxx

[Janey160359]

Hi Sal
Got my date to start chemo 20 November, same as Sam.
Let us know as soon as you can....all on the same day would be brilliant
Janey xxxxxxx

[Janey160359]

Hi Tadpole and Sam,
Had my ANC 6 August and can honestly say I am fine now.
A little tingling on lifting my arm despite regular exercises but nothing to call pain.
I feel like I have a few small lumps under my armpit but I have been told that this is permanent. That too is ok and I can live with it.
Slight numbness at back of arm but the bee sting feeling has gone.
I now can sleep any side with no problems.
Hope your symptoms reduces as time passes.
Hope this helps.

[alabamasam]

Hi tadpole
Yes I had my surgery on oct 9th and I still have a bit of pain but huge discomfort in my arm. It feels numb down one side and I can't lie on it and struggle to sleep. Apparently though this is normal as we have had a lot of nerves cut and hopefully we will get the feeling back but it could take up to 6 months. Make sure you do the exercises they gave you as my discomfort does ease a bit when I go them and as soon you can have a soak in a bath as that also helps xxx
Sam xxxx

[Tadpole]

Hi, hav'nt been posting, but have dipped in to see how things are going. Wonder if any of you can let me know if, after ANC you are experiencing discomfort on side of body after 4 weeks. I know the nerves are affected so apparently they take some time to heal. Feels like a bag of solid jelly all the time, not very painful, but guess this is part of the scenario. Had ANC on 1st October, still not seen onc, you all seem to be moving on with dates, probably postcode problem. Having seen Sam's post about baths, I will be in there tomorrow morning!!! I should have read this site more thoroughly. Will have to sort out FB acct. good luck everyone x

[Nanny_Sal]

Good luck with that. I am sure they will take it in their stride. I definitely think 'we' worry, more than children ever do! Just be as honest as you can with them. Xxx

[alabamasam]

Sal it would be good to have the same start date, ill be two treatments in by Xmas and also in the second to third week around Xmas so hopefully not feeling too bad. Let me know when you find out. We are telling Gaz 's daughters tomorrow xxx
Sam xxxx

[Nanny_Sal]

Well looks like I am following the same path as you Sam. Same Chemo, but not sure of start date yet. Will get a phone call from a very 'dishy' doc in the next few days, to give me the details. Xx

[alabamasam]

Hi, well my treatment starts on November 20th. This is great as I can still go to a Depeche Mode concert that i was going to with my son Jamie and i wanted to do something 'normal' with him before this all starts. I will have 3 rounds of FEC and then 3 of Docetaxel, 4 weeks off then 4 weeks of radiotherapy. All my chemo is happening at the hospital that i've been going to for my surgeries and my rads will be at the Christie in Manchester. All the side effects my doctor talked about were ones that i know about and have heard the October ladies living through so i know i will get through this so 2.5 weeks till i start to be cooked. Gaz my husband came with me as I wanted him to have the information as well. He has gone to pick up his daughters so we can tell them as when they come to us at Christmas i will be two treatments in. I am going to go for the Cold Cap and see how I get on xxxxx
Sam xxx

[Janey160359]

Thanks Sam....am now an official Novenber Newbie Fb member lol
Glad your feeling better ...how cute is Alex but I bet at 4.30 you don't say that. Awww bless

Janey xxxxxxx

[alabamasam]

Hi got you in our group Janey, I am out of bed, it is weird because as I soon as im up I feel better, I just can't lie in bed anymore. I've slept abit better the last two nights but it doesn't help as Alex who is 5 likes to come and visit and these visits start about 4.30 ! He just comes in, says I love you and then goes away- so cute but not after 5 visits half an hour apart but he wakes me up and I don't want to tell him to stop as he is so sweet xxxx

[Janey160359]

Hi Sam sent you a friend request
Janey xxxxxxxxxx

[Janey160359]

Good luck to Sam And Sal for today.
Hope the queasiness gets better Sam

Janey xxxxxxxx

[alabamasam]

Hi Janey/Lilginge,
Sometimes maybe it is easier if the decisions are made for us, like you say, these health professionals know what they are talking about, they can offer the best care, advice. Try to stay off google, i did that at first and it just gave me down days. You have us now !!! 🙂
My pet hate is when you see a friend and they say 'oh my friend had that...they died...' that just puts me straight onto a downer but then i think but that isn't me and as this next 6 months will sort that for me !
I have the decision to make after all this treatment whether to have a full MX or not. This is for my own sanity, it has not been recommended by my surgeon or nurse but they said they will talk to me after all my chemo and rads are done. Believe me i don't want to go through it all but i also don't want this nasty invasion back ever so do i or don't it. This is definitely a decision that i wish had been made for me.
Ladies, i have set up a Facebook group if you want to join, you will find more info as we go on will appear on there. If you just look for me and send me a friend request I'll add you to the group - Sam Robinson Williams xxxxx

[alabamasam]

Hi Sal
Yes I too am anxious get it all started but today does make everything all the more real and right now I'm still in bed feeling a bit queasy and I don't want to get up !
Lilginge this is a huge descision for you but is it not better to be safe xxxx I know it would make the next 6 months unpleasant in many ways but it is lessens chances of reoccurrence ?
Will update later with my treatment plan
Hugs all round today
Sam xxxx

[Janey160359]

Hi lilging,
I too have been told too to make life changing decisions quite a few times. Chemo or not,.....reconstruction or not....... radiotherapy or further surgery(that's a decision still to be made)
In my opinion they are the professionals and need to make these decisions with the rest of the team and guide us along the same lines. If we choose not to follow then that is our decision,.....one that we are happy making.
I personally found the decision making approach overwhelming and a tad unfair....but ignore my rant ha ha.
I fully understand your dilemma. I took the decision to have chemo and then they came back to me and advised it anyway so for me it was a no brainer.
Of course every situation is different but I would ring back and ask to discuss the matter further with your breast care nurse.. It's amazing how talking things though helps you make to a decision without realizing it.

Good luck
Janey xxxxxxxxx

[Janey160359]

Hi sal.
I think this must be the worst time for many of us. What lies ahead and the thought of the SE's it's enough to drive you crazy. At least when you are having chemo you can tick off the days and know that there will be an end to it all. I have another 2 weeks to wait and I know the fears will be with me all the time.
Thank gooness I can rant on here or else my OH might run ha.
Wish I could keep off the google train too but it's not easy. Don't know what I am looking for but I will find something. Not doing it today!
Well that's my moan for today. I am sure there will be plenty more to come.
Just a little line I picked up from a lady on here. Her surgeon told her " give me 6 months of your life and I will give you your life back"
Sounds good to me .....up and onwards.

Hope all goes well with your appointment. Let me know when you are starting.

Janey xxxxxxxx

[lilginge]

After my surgery results I was told rads and Tamox would be my treatment plan, they wanted to do the Oncotype test but funding was refused. Saw my onc yesterday and she totally threw a spanner in the works by telling me that if I was anxious about the thought of recurrence I should go down the chemo route, but it is my decision and one I have to make by the end of the week. Am only 44 with family history (mum and sis, both had chemo and rads which is something I brought up at the meeting) so I think that is why she is suggestig this as an option to consider......
My tumour was quite small (10.5mm) with clear margins and no lymph or vascular invasion, HER2-ve and ER and PR positive. The stats test she did showed without chemo there was a 5% chance of recurrence I think, it was a bit confusing to be honest.
Am going to ask for a second opinion as wondering if she was just concerned about my worries but as the nurse in the chemo suite who rang me later in the day said, equally they don't just give chemo on a whim....
Such a tough decision to make, really not sure what to do...... xxx

[Nanny_Sal]

Hi all

So today I meet the Oncologist for the firer time. Hopefully I will find out what type of Chemo I am having and when it will start! Feeling a bit apprehensive. I really want to get going with this, as the sooner it starts the sooner it finishes. But suddenly everything seems more real. 😞 I've enjoyed spending 2wks being 'normal' being back at work and forgetting about cancer for a bit. But all that changes today.

Anyway no point moaning about it and feeling sorry for myself. It's got to be done if I want my life back. Have to keep telling myself that this is just a few months of hell, that will hopefully give me my 'normal' life back!

I'm hoping Chemo isn't anywhere near as bad as I am imagining. (I must stop googling)

Good luck with your appointment Sam.

Xxx

[alabamasam]

Thanks Janey
Apt is tomorrow afternoon so ill let you know what lies ahead for me xxx

[Janey160359]

Hi Sam,
Hope the appointment with the onco goes well tomorrow. Let me know what day you start your chemo.

Natalia,
hope the wobbles subside. Wobbles! getting them all the time but think I need to keep myself busy, I am not used to been at home and not working.

Michelle,
love the description....great diva hissy fits, Describes me too ha ha.

Well must go..need to sort some antibiotic cover for my Hols. Oh the joys of being bc.

Have a good day all you lovely ladies,

Take care
Janey xxxxxxxxxx

[alabamasam]

Hi
I think I haven't had wobbles yet as I just feel like this all really isn't happening ! I don't feel ill and apart from my numb and slightly painful arm from my surgery, most days I feel ok. I'm almost like a robot just going through this process, maybe that is how I will get through xxxx

[no1penguinfan]

Hi natalia when I say wobbly moments im being kind to myself cos at points i have whats better described as bloody great diva hissy fits with all toys out the pram!!!!! so dont feel bad for one minute if u have a "wobble"

love and good wishes xx

[Amber_D]

Hi Girls,
Just popped in from the April Angels to wish you all good luck. Chemo is not a bed of roses but is doable and you will have each other's support all the way through.
I was diagnosed 9/1, surgery 9/2 Lumpectomy and ANC, grade 3 tumour. Chemo 2/4 Fec-T x 6 then 19/8 Rads x 19. I feel much more like myself again still have a few aches but I have eyelashes, eyebrows and some hair, now getting back to a normal life so there is light at the end of the tunnel.
This site is a wealth of knowledge which will help you through your journey, I know the support I received from the AA's has been invaluable and is still ongoing. X

[flower75]

Thanks no1penguinfan, sounds great and I'm def going to give it a try!  Best wishes xx

[alabamasam]

Hi, if you do send me a friend request on Facebook can you let me know who you are on the forum so I can add you to our Facebook group x

[natalia_r]

Reassuring to read that others have "wobbly moments". I am seeing the BC nurse this Friday where she will probably tell me I am ok to go ahead and start chemo in the next two weeks as my wound seems to be healing well and the seroma seems to have settled. But I am dreading the Fec-t more than I was dreading my MX...is that mad? X

[no1penguinfan]

Hi flower75 the book is the funky fresh juice book highly recommend it its bright funny and very positive exactly what we all need enjoy and best wishes xxxxx

[flower75]

Hi hope you don't mind me jumping on but I just wanted to ask no1penguinfan the name of the Jason Vale book please? I had a quick look on Amazon and he has a few out and I'd really like to get the one you've mentioned. Thanks xx

[natalia_r]

Hi Sam,
I have just sent you a friend request through Facebook for the group. In case your wondering who on earth is Natalia.

Nats x

[alabamasam]

Hi Ladies
Not sure if any of you are interested but I have created a closed private group on Facebook called November Newbies. Lulu created an October one and we share advice, pictures etc and can talk more openly about everything and anything.
If you want to join send me a friend request on Facebook and i can add you to the group. My Facebook id is in my profile on here so hopefully you can find me as I don't think i can put my name on this message but just in case it is Sam Robinson Williams and my profile picture is a Dalek,
Sam xxx

[no1penguinfan]

Thanks for the welcome ladies  

good day today 2 good things breast care nurse said i can use deo under right arm and shave YAY fed up with only smelling nice on left side!

Juicer arrived I have a great book by jason vale in the book a few ladies with BC have enterd their stories and highly reccommend the juice way. 

My surgeon didnt poo poo it either the recipies are designed to put back all that chemo takes out which in my mind balences things out its great for before during and after chemo especially useful if suffering with sore mouth sicknessetc.

If anybody would like recipies posted let me know or if want the book do not buy from waterstones as 24.99 

amazon new £12.99. much love to all xxxxxxxx

[Janey160359]

Hi Michelle
Great to see you have joined our group.
We are all in this together and will be invaluable support to each other.
Rant complain cry whatever, we have all been there.
Good luck with your chemo and keep us posted.

Janey xxxxxxxxxxx (not the one who sent the link that was JaneyW) confusing but lots of us Janey's about ha ha.

[alabamasam]

Hi Michelle, welcome to November xxxxx
Sam x