Anyone due to start chemo April 14??

[Kirstie77]

Hi everyone,

How are you doing Rosie, I contacted the website and I'm getting a full long thing sent to me so that's good, I'm also going to a shop near me tomorrow or a full wig fitting which is good I want to get it sorted, I have also bench marked a few on the simply wigs website , so once I know what suits me I can order x I should know what a wle is I had one before the mastectomy lol !! I haven't hidden mine at all I talk quiet openly about it, this shocked people at first but now it's all good and I don't have to pretend, I have no pros-tithes and didn't want one yet, and the only people I need to worry about is me and my family x I find it easier to post updates to my just Giving page as I don't need to tell everyone individually, or I do a one text update to everyone one and say I'm turning my phone off now x

EAM I also got the mummy lump book, made me cry but I decided I'm not going to use it, my son knows everything in very simple terms ( i had bad bits i had to have cut out, now I have to have some medicine and it will make me poorly, and my hair may fail out, but explained this without using the word cancer, we have experience of cancer and I do not want him to be scared, but we all know our own children and they are all different x my child it about to turn 8 x
I googled for the local McMillan number, I am on sat sick too, but I wasn't entitled to anything as my husband works and we own out own house (mortgage) !! I had a word with work and asked if I can work from home for 2 days a week and they said yes so that will help - food may have to on credit card but rest should be okay we are almost 2k per month down but there isn't much help for us ! McMillan helped and we got a £300 grant which is the highest amount you and get and they were brilliant - go in though as I didn't get much help from web ! Finances have been a nightmare for us too x

The lgfg workshop is not near me :0(

I went out or a few drinks on Friday night, drank far too much ended up on the kids play equipment in the garden, a very funny night but completely inappropriate ! I could have really hurt myself ! Was fun though ;0)

So wig shopping tomorrow, line in on Tuesday and ECG, chemo on Wednesday - busy week ! Feel very nervous !

Xx

[rosie14]

Yes I had lunch on chemo ward just before I had chemo I wasn't going to but the oncologist said I could. I think it is better to eat little and often!

[Wildpurl]

Good morning everyone, Rosie you are doing so well, an excellent start for us In April and I am very glad to hear that you are feeling OK. I do think you are right it will be best to keep thoughts off possible side effects and have something else to focus on.

Suzie, I haven't told many people about my diagnosis either, for similar reasons. Now I am going to have chemo I am telling a few more though.

Loulou, I am also having FEC-T, 3 cycles of each. I had micromet in the sentinel node and a level 1 axillary clearance with no further nodes affected. My cancer is ER+ 6/8. I was offered the chemo as it further reduces the risk of recurrence for me by about 5%, and I decided that was worth while. The oncologist told me that FEC-T was probably more than I really needed, but that he considered it to be the gold standard of adjuvant chemo, and he preferred to give that.

From what you said it seemed as though you had been going to have all FEC and now they are thinking of giving you all T, is that right? Or is it now FEC-T where previously it was only FEC?

To whoever asked about the Look Good Feel Better session, I think it was Kirstie, there is a place called the Fountain Centre at my hospital, which does complementary therapies, has a nice comfy seating area where you can get coffee or tea and chat, and it also does LGFB. It was also where I went to try on wigs, a lady comes there once a week. I was chatting to another lady while I was waiting and she told me I could book on LGFB there, so I did it right away! Maybe there will be something similar at a hospital near you?

Have a good weekend everyone, the weather is lovely here, hope it's the same for you.
Wildpurl x

[Suzie68]

Rosie so glad you're feeling ok and the se have not been too bad, did you eat before the chemo? I'm sure it's probably better to eat than not? Kirstie WLE is a wide local incision (lumpectomy) and snb is sentinal node biopsy. Well done in your fundraising that is amazing, I haven't written my fundraising page yet for the breast cancer walk, partly because my diagnosis is not common knowledge although quite a few people do know. I just got sick of saying it to be honest and I don't really want people to treat me differently. I will man up though this weekend and create my page as nobody can donate if they don't know! Have a lovely Mothers Day tomorrow all great news on the grant front oh and I finally got my period btw xx

[rosie14]

Still ok ladies went to bed at 9.30pm last night got out 4 times to toilet but it was only the liquids that they had pumped through me the day before so that's acceptable! I am finding it best to eat little and often if you feel just a lttle possibly imaginery pang of nausea it takes it away! Try to keep your mind off side effects starting and have a goal for the day. Not cleaning the house from top to bottom though!!! I am finding puzzle books good. Hubbie is being very supportive at mo and cooking and washing up and I am making the odd cup of tea and feeding the dog. I am lucky I am 58 and my 3 children are all grown up with partners and grandchildren. I take my hat off to you all dealing with children at home and do wish you all the very best for your treatment and that it will be gentle on you. Remember ladies this is not for ever we can get through this time in our lives !!

[loulou1262]

Hi Ladies

Hope all is well... I've had one of those run away train days ( as my hubbie calls them) This is when every niggle or pain I feel in my body, even if it only lasts 2 secs, goes back to my cancer. Hope these days diminish in time as tbh I do my own head in !!!! Anyway, hope you are ok Rosie and the SE are not too bad, just think, you will be the first to finish

On the financial front my BCN has told me when I visit next week she will give me a macmillan grant form to fill in which is available to everyone. Both myself and husband work and we will still qualify, ask your BCN as any financial help is better than none.

Having nice glass of red tonight, cheers xxx

[EAM28]

Thank you x

[Lucy_BCC]

Hi EAM

Here's the link to the Macmillan website where you can find the financial support details:

http://www.macmillan.org.uk/HowWeCanHelp/FinancialSupport/FinancialSupport.aspx

Take care
Lucy BCC

[EAM28]

Hi kirstie77, yes I suppose I am a spring chicken! You are young too dear:). Well done you for planning to do the race for life! My mum,two sisters & two nieces are doing it this yr too - hopefully I will join them next yr!:). This may sound silly but how did you get in touch with a MacMillan nurse for financial advice? I am currently on 8 months stat sick pay ( I was advised not to work through due to risk of infection as I am a support worker for adults with learning disabilities). My husband is now working away on a job to get extra money for us - just when I need him the most! Xx

[EAM28]

Hey Rosie14, I'm glad its gone well for you so far! I spoke to a girl that lives near me today - she had chemo a few yes ago & said she felt fine afterwards so cleaned the house from top to bottom then felt awful! Keep us updated (if u feel like it). This time next week I will just have had mine:) xx

[EAM28]

Hi loulou1262, I am having 6 sessions of chemo every 3wks. It will be FEC for fist 3 then T along with herceptin for the last 3. I hope you get a start date soon. I hope they still go ahead with mine - my arm has been filling up with fluid ever since surgery so has been drained 4times but my nurse said as its not infected hopefully they can still go ahead. My little girl hasn't got a clue what's going on which is prob a good thing. Think she'll notice soon enough though:(. My oncologist gave me a book to read to her called 'mummy's lump' - might be good for your 9 yr old? Or he may find it babyish? I'm just not looking forward to my little girl going from pillar to post as she's not old enough to go to pre school or school everyday. She will keep me busy if I feel up to it though!xx

[Kirstie77]

Thanks Rosie I have put in a request thanks for that, have you got a hat for your head then or a scarf I may have to find a hat :0) good alternative and worth a try x

[rosie14]

Thanks Kirstie!
Take a look at Heather's Hair website hairpieces made with real hair especially made for cancer patients You pay P&P and make a donation. They have sent one out to Cyprus to me!

[Kirstie77]

Hi Rosie
Yeahhhh - good to hear from you glad all went well x

Hey Suzie thanks for the link I will have a look into that x I really need to get a wig sorted but feel like I'm running out of time ! I asked about the injections I will be having them 24 hrs after the chemo they are called nylasta ?! I think ?!?! it depends where you are being treated I think. One dumb question, what is your WLE and snb ?

I have signed up to do the race or life, I have raised £1125 already and some of my friends are doing it too, we have set up a group called breast friends and have raised over £2500 - That's 5k but my nurse said I may not have the energy but could be pushed in a chair if not though I have to be careful immune system.....etc


Hi tlj63 welcome to the gang :0) my little boy has been surprisingly good about it all though I haven't been having any meltdowns in front of him and I haven't told him its cancer, just that I have had bad bits that need o be removed and I'm going o have one horrible medics that might make my air all out but will make me poorly. He was okay with it all except the hair, he cried and said I don't want a bald mummy, that broke my heart but I said it would be okay I'd get a wig !!

I am gong to try the paxman cold cap, apparently the cap s the worst bit and most people give up after the second round, BUT I have been speaking to someone who didn't and she still has her hair, she lost a bit and had one little patch at the back which fell out but you couldn't notice as she had long hair ...... Everyone is different ;0)

Hi EAM28 - wow your a spring chicken, I think you might be the youngest of us so far, I'm 37 (just last month), I have had 2 operations too its like a whirlwind isn't it ! The more I read on here the more the "this happens to older people" I find is just plain not true ! I still class myself as young btw lol !

Loulou, the more I read from you the more I think we are the same lol !

I have still not been to the dentist, and I'm due to have my PICC Line fitted and my ECG on Tuesday ........

[rosie14]

Have posted above all well so far thanks ladies!

[rosie14]

Hi everyone just to say I had my first chemo session yesterday was bricking it! It went as well and I got through the night without any side effects so just hoping I don' tget delayed sickness I can cope with any of the other symptoms. Hope this will encourage all of you April starters. I joined Apirl becaause March aer on their second round!

[Suzie68]

Thanks loulou that does make sense pod to know I'm 'normal' whatever the hell that us these days! Lol xx

[loulou1262]

Hi Suzie

I was regular as clock work as well but went 6 weeks between my last periods, bcn said it was stress related.x

[Suzie68]

Hey ladies I have a random question I had my WLE and snb on 12 feb and haven't had a period since, I am regular like clockwork every 21 days, sometimes even sooner, periods for the last few years have been totally horrendous and now nothing, haven't started chemo or tamoxifen yet, has anyone else experienced the same ? Sx

[loulou1262]

Hi Ladies

Looks like we all share the same concerns,  I too am really concerned about my boys seeing me really ill. I have also had two surgeries and was not that bad afterwards, well not as bad as they expected! I initially told them I would be poorly whilst I recover and I think they think the worst is over, I keep having to gently remind them that I will be ill again (Hopefully not too bad!!)..Have any of you decided to use the coldcap? Eam28 do you know what chemo you are having? Im ready to start just waiting for my wound from haematoma to completely close, nearly there, should be starting two weeks tomorrow.

Wonder how Rosie got on, hope your ok

Take care everyone

Louise xxx

[EAM28]

Hello Girlies! I am starting chemo on the 3rd April. I was diagnosed 23rd Jan with invasive ductal, grade 3, her2 & ER positive. Have had two operations & now ready to take on the next stage! I am 28, married with a 20month old little girl:) xx

[Tlj63]

Joining in too. I'm starting FEC T on the 4th. I had my first screening mammo at the end of January, called back for biopsy the following week. Had mastectomy and reconstruction 20th Jan. Then told I had micromets in my sentinel node, so starting chemo next Friday. Feel like it's all been a bit of a whirlwind few weeks, but the surgery has healed well so now just want to get on with the next phase. The sooner I get started, hopefully the sooner it will all be over. Trying to convince myself that if I stay positive I will cope with the side effects better. Really, don't want my children to see me horribly unwell and not coping. My son's friend (aged 10) died of a brain tumour last year so I think he is worrying about me, despite the fact that we have told him it's a completely different disease.

[Suzie68]

Morning Ladies
Rosie good luck for today I hope it all goes well for you and you will be in all our thoughts today.
Kirstie Look Good Feel Better have web-site and are generally based in hospitals, I cant get into mine at the Marsden until May but have added the link for you
http://www.lookgoodfeelbetter.co.uk/workshops-and-advice
I got bought a wig on the day I was told I would have chemo and had pre-booked an appointment for a local private shop in Surrey (just Googled them). I was really surprised how lightweight they are too and very realistic looking. In the end I decided to go for an acrylic one as the human hair ones are unstyled and I found it very hard to imagine what they would look like. My current style is bobbed and I have a lot of hair but it is quite fine, I found similar styles looked to wiggy on me as I don't have that much hair so have gone for something much shorter. I am not even certain that I will wear it but at least its on standby, must also invest in some scarves. I saw a great you tube video of a young woman in the US who showed you how to make them out of t-shirts with the sleeve part cut off and I have tried this with vest top and it is seriously quick and easy.

Thank you to all the 'vets' for popping into this tread, it really does help to hear from those you have come out of the other side.

I cant remember who I had an earlier convo with about the self injections after chemo? I asked my BCN about this and she said they are to boost your immune system if have low white count but it is quite rare to need them. I also told her that I had signed up to one the BCC sponsored walks before I knew I was going to have chemo and wondered if it was something I could still do (10 miles is a long walk even without it!) and she told me about one of her patients that ran the London Marathon last year on while on chemo. That really encouraged me to believe we can get through this and still have some kind of normality. I am having hypnotherapy on Saturday to try and get my body to work with the chemo rather than try and fight it. I have no idea if this will work but I don't think it can hurt and makes me feel like I am taking some kind of control in all this and I know and trust the person who will be doing it.

Im off for a bone scan today, apparently they inject me with something radioactive and I have to walk around the hospital for 3 hours while it goes through my system. Its strange how things that would have previously terrified me seem quite normal these days!

sxxx

[loulou1262]

Hey Rosie, good luck and hope all goes well, will be thinking about you today xxxx

[Kirstie77]

Hi Ladies,

Rosie, I'm sure our probably feeling a little apprehensive tonight, so I wanted you to know that I'm thinking of you, and you will be in my thoughts tomorrow, I would image there are lots of other ladies on here who will be thinking of you too xx be strong and I'm sending you a big hug. X

Rach, still no dentist for me, to be honest I can't be bothered, it's just something else to do and I feel like I'm running out of time to do everything I need to before I start my Chemo, is that really bad? Have you been yet?

Books and wine, - I keep getting told I'm brave too, I don't think I am, I'm just doing what needs to be done, I'm grateful for those quiet moments where I can reflect, have the odd moment, and carry on, im lucky i have lots of really amazing friends x You are very good to be donating your hair that's a lovely gesture, you and Amber are great, I'm dreading having to part with mine and I can't bring myself to get it cut !

GMT - this site is just amazing, I'm so pleased I joined, we can all get through this together, I'm sure we will have lots of hints and tips :0)

Wilpurl, I really need to get this wig thing sorted, i think i could have some fun with it ;0) how did you find out about the look good thing, I haven't heard of it except or on here, could McMillan help?

Sweet loulou, I'm sorry you didn't get the news you were expecting, it's hard when that happens I felt floored when they told me I needed the mastectomy when I went for my results of the lumpectomy, as I was expecting my treatment plan, - its hard, you get your head around one thing and then something else gets thrown into the mix, I'm sorry I can't offer any advice maybe some other ladies can but I'm sending you a hug if you need one too x x

Appointment by appointment we will all get through this, put your best foot forward ladies we may have a mountain to climb but the view will be brilliant once we have done it ;0)

Get me all hugs and metaphors ! Feel free to tell me to shut up lol xxx

[loulou1262]

Hi Wildpurl

I've tried a couple of wigs and I was also surprised at how realistic they looked. I have very thick hair which is a bit wiggy anyway, so couldn't really tell the difference!!

I visited the onc today and was surprised at the outcome and any thoughts would be appreciated.

They advised that initially my results were 1 node positive,  1 node micromet, this led to me having full clearance,  fortunately no further node involvement.  Today I have been advised the onc wants the micromet checking to make sure it is a micromet as the pathology report is not straight forward...they will then offer the following. 

If the original report was correct I will be offered Fec, if they decide the micromet is now a macromet they will class me as two nodes positive and I will have Tac. I will find out next week and hopefully start the week after, is this treatment plan similar to anyone's. I always assumed that as I was node positive I would automatically have Tac, im going to post on chemo thread as well and see if any ladies previously treated have been advised this.

Thanks ladies xxx

I

[Wildpurl]

Hi everybody, I went to look at wigs today. I was really impressed with how lightweight and realistic the ones I tried on were, and feel confident that if I do need to wear a wig, it will look good. The lady matched my hair colour and found two styles both very close to my current style, and has entered all the details in her system, so if I decide I need one I can call her and a few days later it will be ready for collection. It's one less thing to worry about, so I'm happy I went along.

I also booked myself into a Look Good, Feel Better workshop on 15th April, something to look forward to after my first chemo!

[loulou1262]

Hi everyone

Got back from the Look good, feel better event this afternoon and it was great. What a selection of goodies including Chanel,  Estee Lauder,  Benefit and Clinique to name but a few. It was a small group of ladies and tea and coffee was provided. We practiced various techniques with make up application and everyone was really friendly, highly recommend xx

[GMT]

Hi, another April 2012 'bunny' popping in to say hello. As Sarabee and Southpool have said you will find lots of support here, discuss all sorts of things you can't / wouldn't want to share with your nearest and dearest! You will probably make friends for life as only those going through it, really understand. Lots of love to you all xxxx

[Jo_BCC]

Hi booksandwine,

Here's the link to the Little Princess Trust for donating hair.

http://www.littleprincesses.org.uk/

Take care,

Jo, Moderator

[Amber_D]

Hi bookandwine, I had my hair cut just after my first chemo and donated it to the Princess Trust which makes wigs for children. If you go on the website it tells you what to do with your hair. I felt I needed to do something with it and it certainly went to a good cause xx

[booksandwine]

Hi I have had it confirmed that I will now start chemo in April - seeing Chemo suite on Thursday and Oncologist on Friday.

Took a while to get my head around chemo as I was to have had the operation first, but due to growth and unable to rule out something on my lung and possiblity of things on my right book - Chemo it is.  I think I am ready?? - Keep getting told I am brave - half of me just wants to get started and the other half of me wants to stay buried under a pillow and duvet - probably normal !!!

Will be up in Mount Vernon which looks to be quite nice

I have shoulder length hair which I am looking to get cut in readiness - looked into donating hair but does not seem straight forward - any advice or has anyone donated hair?

[rach72]

Morning everyone.

How is everyone feeling today?

Very good luck with your 1st chemo session on Thurs Rosie, sending loads of love.  

Kirstie, I didn't book an appointment with the dentist either. I have a ridiculous dentist phobia which, after all this, you really would have thought I'd have got over! I shall pluck up the courage and (maybe) do it today. Hope you've managed to get an appointment.

Loulou, hope the look good, feel better course goes well this afternoon and looking forward to hearing all about it.

Thank you so much for the reassurance Southpool, it's really lovely to hear from people who've already been through it.

xxxxxxxxxxx

[sarabee2012]

Good morning to the latest April thread. I'm one of the 2012 Chemo Bunnies and wanted to hop in and wish you all good luck in your journey. As Southpool said the thread will be your best source of information, entertainment and just a place to post when you are feeling down or if you're ok. The bunnies have gone from strength to strength and it was only because we had each other that we got through it all. Much love to you all xxxx

[loulou1262]

Morning Rosie, hope you are well, are you using the cold cap? 

Hey Kirstie, I'm trying the coldcap but im going to have a wig ready and waiting.  Im going to have my hair cut into a bob and buying a wig the same colour and style. I've also purchased a few headbands from accessorize which are lovely,  these are to hide my greys if I am lucky enough to keep any hair. Im going to the look good feel better session this afternoon  so will report back later to let you know how it was xx

[loulou1262]

Thanks Southpool, just what we need to hear, hope you had a fab holiday !! Xx

[rosie14]

Not sure as its different here will report back!

[southpool]

Hi Ladies

I am an April 2012 Chemo bunny & am writing this at Newark airport on my way back from holiday in the States. Joining this thread & forum will be the best thing you do during treatment. The support I got from my fellow bunnies was invaluable and 18 of us are still in touch, 'speak' daily & see each other regularly. Chemo is tough but 2 years on it seems a distant memory. Good luck & take care of each other.

Hugs
S x

[Kirstie77]

Oh and has anyone investigated Wigs yet, I'm trying the paxman cap but have been told will know before 3rd treatment if its going to work, so think I may get one ready.....

[Kirstie77]

Hi Ladies,

Yes Louise we are the same age, I noticed that too x

This is such a lovely forum and so nice I hear from other people who can reassure us before our first session thanks Penny and Amber.

Rach, I didn't get onto to the dentist today so I'll call tomorrow hope you were better than me ;0)

Rosie sending lots of good vibes your way for Thursday.

I am feeling much better today after seeing McMillan and my chemo nurse, she went through lots of things and despite being really nervous this morning I felt much better about things before I left. I am waiting for a call tomorrow to confirm the date for my ECG and picc line to be put in.

[loulou1262]

Good luck Rosie

You will be the first one of us to get the chemo, which type are you having? Xx

[rosie14]

I am due to start this Thursday which is only just March so I thought it made more sense to join this group as the March group are on their second round!

Went to the hairdresser today and had my hair couloured and then cut short, also puchased two sun hats, I live in Cyprus, and a head scarf. Am beginning to feel rather anxious now!!!!!

[rach72]

Thanks for the Dentist and flu jab tips ladies, I will get on to that now 🙂

xxxxxxx

[Penny47]

Just popping in from May Moonbeams (started chemo May 2013)- Best wishes to you all.  Chemo is doable but it does eat up a chunk of your life.  I don't know where I'd be without sharing with my fellow moonbeams.   Now I am looking forward to going back to work with "different" but interesting hair!  This time last year I was not feeling quite so confident!  Good luck all!

[loulou1262]

Hi Kirstie

Just noticed we are the same age. When I visit the breast care unit everyone seems to be older, I find myself scanning the room for someone of a similar age. Just shows this blighter can get anyone !!

Louise xxx

[Kirstie77]

Hi loulou,

Yes I need to do that, I have been putting it off so thanks for the nudge, I will call them tomorrow I get dodgy gums as it is.

I did go and have my flu jab though as instructed :0)

[loulou1262]

Thankyou Amber D for posting. It is so helpful to hear from ladies who have been through it. Hope I can manage the water to flush the chemo through,  3 litres a day I think ?? Xx

[loulou1262]

Hi ladies

Forgot to mention that I visited the dentist this week and got full check up with X rays as we will not be allowed to have work done through treatment.  When I rang the receptionist said I would be waiting three weeks for a check up but when I explained she got me in within a couple of days.  Also the mouthwash incase of ulcers through treatment was prescribed by dentist (nice as a freebie, got 3 bottles!!) xxxx

[Kirstie77]

Hi Amber,

Thanks for the tips I will take them all on board and invest heavily in antibacterial gel !

Suzie,

I'm off to see McMillan in the morning to go through my options so that will be good, and I have requested a meeting with my boss to see if they will let me do anything from home so we will see, I figure 6 is an easy number to tick off even when it feels like its taking ages, I feel like in the grand scheme of things this year has flown by until now, lets home the next few months do the same we are on the right road and I'm sure with the lovely bunch we have on here so far we can push each other up any hills we may or may not encounter xxx. I read on one thread that chemo is our friend and its right, we just need to get to know it ;0) x

We are all stronger than we think ;0)

[Suzie68]

I am starting to think that I am being a bit optimistic about working full time but I am just going to try and keep an open mind and see how it goes. That's a real shame about your sick pay, s if you don't have enough to worry about, I think MacmIllian can help with money worries. I get full pay for about 12 weeks so will have a bit of a buffer if I do need to be off. My Consultant didn't really comment when I said I want to work fulltime, he just said see how it goes. I just Googled cannulas and PICC lines in between replies, I don't think that was the best idea; I just envisioned it going in the back of my hand at least there will be no surprises now !

Be strong, we can do this xx