Breast Cancer Now Forum

EAM - that's awful about your wigs as if the hair loss thing isn't stressful enough, lets hope you are pleasantly surprised ! I picked my wig out and haven't heard back yet either but I don't think I like the one I picked now anyway, so I ordered a different one from simplywigs.co.uk, thats not arrived yet either so I'm just going to wait now, I also ordered a couple of buff head scarfs but I just think I look silly, I need to practice lol so many new talents to learn. I love a bit of gardening can't wait til I'm able to get out and about in mine, although I think after all this i may become a hermit for the next 6 months and not leave the boundry of my house just be be sure ! Lol The meals are pretty good to be honest Rosie especially now I can eat them :0) how are you feeling especially with your travel plans x x Sending you a hug Jackie hope you are coping okay xxx Has everyone done the Facebook thing ? I wasn't sure because I feel cocooned in here :0) x ... View more

Hi Rosie your so fantastic, just thought I'd say that x Well after yesterday I was transferred from the private hospital were I am to A&E in an ambulance with a suspected clot, (I couldn't breath) - honestly you couldn't write it ! It was good I was still in hospital though as they were really quick to sort me out, they gave more injections, scanned me and then I was returned back to my hospital where I was - at least I'm getting all my issues out in the first round ! Hope everyone is coping okay, it looks like it may be sunny here today xx We are going to be some blinking tough cookies after this :0) xx ... View more

Hi all when I posted earlier I seemed to have missed a whole page of thread I'm so sorry loulou Jackie and Rosie, I must seem all about me ! I'm so so sorry ! Jackie, where else can we get out what in our head with others that have any sort of comprehension to how you might feel, loulou im sending you huge hugs xx Rosie and Jackie I hope you are both okay, Jackie just take one day at a time x and rest I felt like by day 5 I should be better and I wasn't and then thought it was me being negative in my own head, I wasn't as it turned up but I was tough on myself and forced myself to do things I wasn't ready for so just go with the flow, my BCN said allow yourself 7 days xx One note on the constipation, I had this issue too and also had lactulose, but movicol really helped me too, you can get it fom the docs, I just bought some over the counter for speed x Rosie I'm still here they said expect to be here for the weekend .... ... View more

Well I'm still in hospital but am feeling so much better, I just have the horrible mouth too and indigestion at night but I find a cup of hot milk helps with this before bed. They have told me I still can't go home as I have no immune system at all they used the word neo something or other and I have a sign on my door warning everyone and telling them gowns and gloves etc which is good but visitors are restricted so its boring but I seem to have a established a routine of sorts. It is mad what the mind forgets, as although I'm still in hospital and won't be leaving anytime soon, my determination is back :0) xx Have a good weekend ladies x ... View more

Hi ladies thank you for your lovely messages, looks like I will be in here until at least Friday, my blood count is going down now up, they have said that they will lower the dose next time so it should be much better than this - thank goodness ! Glad to here everyone is getting on okay. Xx ... View more

Hi ladies, thought I would pop my head in. I haven't been doing to well, I was re admitted to hospital yesterday and will be here until Wednesday by which time I hope to be feeling better, they are not sure if I had an underlying infection or if the chemo dose was too high for me so they have said they will reduce it next time. I am having hot flushes, high temps and stomach cramps, I look 6 months pregnant. Everyone else seems to be doing so well and I'm normally the go getter, I feel so flat, that little number 5 is starting to feel big - anyone seen my mojo? ... View more

It won't be spreading I was worried, these little niggles do pop into your head but you have to try to put your trust in the doctors, it's hard I am a massive control freak, mine was the most aggressive and the doc said about the chemo would do its job, was just being as diplomaticas he could whilst looking at me like I was worrying about something I shouldn't be x I have downloaded a couple of relaxation apps for free today I thought they would be good to help me sleep, have a look for a few they might help in moments when you think it's getting a bit much, this last wait to start is the hardest xx ... View more

Thanks ladies, I just found this blog from a young girl, she gives tips on makeup application and headwear she is an alopecia sufferer. She gives cheap solutions - not all of it may be relevant to all of you but I'm sure some of it will be good - anyway thought I'd post http://eyelineher.blogspot.co.uk/search/label/video I Mummy crow I was 3 weeks wait too, I know it feels like ages to wait and I asked doctor what if it spreads in that time mind was stage 3, he said chemo would do its job as thats the whole point of it, but its very very unlikely it would spread x I know you will have it there in the back of your mind but wildpurl is right they know their stuff and hey don't mess about, remember your on the right road, the week before you start you will find you will have lots to do and it will fly past x ... View more

Hi ladies, After I had my treatment yesterday you have to wait to 2 hrs with the cold cap so be prepared. It is deffo doable I wore the cap the whole time, near the end my husband was hot so opened the window for 10mins on the quiet - the thoughtful sole and I got very cold very quickly inside and was shivering lots they got me blankets and a hot wheat pack and dried my hair but it took a while to settle, because I have seem to have a bug as well my temp spiked again so I didn't get to leave until 6pm, I think they thought about keeping me in. This has put me off using the cap again because of the extra hassle, I have antibiotics to take at home so that will all be sorted, Just shows how much a little bug can do though so stay sensible ladies, (I went to my nieces birthday on Saturday and heard one of the mums say her child was sick on Friday but had been fine since, I should have left !) I thought I would be okay lesson learnt - nothing is going to kick me off track !!! So It did make me feel pretty sick tho last night, and pretty washed out BUT I'm fine today so was obv more to do with the bug. My mouth was dry last night and is still dry today, I had to pop to the loo a few times too in the night because of all the fluids. I have had some melon and avocado and a banana over the course of the morning and plan of having some soup later. I feel okay, although to be honest I didn't really expect to feel much until tomorrow. They give you plenty of pills to take home I was surprised I have 8 to take today inc antibiotics but its all good, and I took Rosie's advice and made sure I'm taking them all (as instructed), and it seems to be working x Good luck ladies xxxx ... View more

Hi wild purl, I hadn't really thought about all the pills I would have to take and I have to have an injection tomorrow to boost my immune system but she said I can do it myself to save me coming back in so that's good. We are going to be pro's soon. I have learnt so much already, especially about what not to say to someone who has it lol ! Don't worry about the cold too much as I really thought thy were going to cancel on me today, the nurse even said so but the doctor then said it would be fine. Tlj63 I know what you mean, the waiting is the hardest part but it will be here before you know it and then you feel like you have something to do x I have been sending my husband to chemist to buy the hand sanitizer hey use in the clinic's so you are not alone, I also cleaned he fridge out yesterday and told my husband about the food storage protocol ! I need to get a head scarf even if it is for around the house I better get looking. Other than that I got through the whole session and still have the cap on as we speak you really do get used to it ! Good luck ladies xxx we are all pretty amazing ! ... View more

Well after a bit of a false start my bloods had dropped to 2.4 it needs to be 3 there was some backwards and forwards to see if it can go ahead and I'm hooked up to he water and the cold cap is on ! It is freezing ! Really cold, I know someone who used this and kept most of her hair, I'm not really sure I am that bothered at this stage, if you are having the old cap take a headband/sweatband for your hairline it will help. 15 mins in and you get used to the temperature a little but when it first goes on it is a shock ! So far I have had some emend anti sickness, four steroids, and a yellow anti sickness pill ! ... View more

Hi everyone, sorry only just getting to reply, didn't get home til 10pm last night, had the line fitted all went well it was no problem at all, went in well and ECG all fine. I had a temp and low blood pressure though so they tested my blood as well and I had to wait looks like i did have a bug rather than me getting myself into a state which is good as hat makes me feel better somehow lol, as my appointment meant wasn't until 6pm in the first place it, I was there late with all the faffing. So as I write this I am sat in the hospital waiting to be hooked up for my first dose, so by the end of today here will only be five more to go ! I have just tried on the paxman and it doesn't look as big and bulky as I nought but its not been turned on yet lol. I have brought snacks, a laptop, kindle, scarfs, I think they think I'm moving in - I was in the brownies .... Lol maybe next time I will bring less ! Good luck to everyone who is starting chemo today i am thinking of you and well done Rosie you are rocking this so far, we plan to move abroad one day I'm feeling Cyprus envy ;0) xx ... View more

Hi Rosie, I love Cyprus it's beautiful, have you lived there long? Let me know if there is anything I can do to help with the jargon, we get that much info thrown at us it's hard to keep track. I think your right and I may be getting myself in a bit of a panic, I'm not the most patient of people so all this waiting is hard, right time to sort myself out ! I will let you know how I get on with my line, is everyone having the cannula ? ... View more

Hi ladies, Well I went wig shopping yesterday and they were really nice, I have settled for a bob style it was okay and looked natural but the closer it gets to starting chemo the less fussed I am about losing my hair and I really dont like being cold ! the woman at the wig shop said to take a scarf for your kneck if you have the cold cap as the pipe comes down there and its handy to have something to keep it off our kneck. I went to my nieces 3rd birthday party at the weekend and spent most of yesterday being sick, had to pull over on the way back from the wig shop and lean out of the car !! so I'm feeling really fed up today, I have managed a biscuit and am going to try some toast in a bit I'm going to have to tell them tonight when I go in for my line, I hope it doesn't put things back. I asked for the cannula instead of the PICC line and was told they don't do the cannula as with each round it becomes harder to find a vain and that way you have to deal with less needles ? So I didn't get a choice either but the other way round. I have private health care with work so maybe thats why it's different ? It's good in one way to be private but its very isolating as I don't get to really meet any one, and for any help you have to go off and find out yourself. ill also be in a room on my own having chemo which is why this forum is such a saviour, bizarre really I get healthcare but only get paid stat sick ! Well done Rosie day 5 and your doing well, how are you spending your days ? I'm worried about the boredom x ... View more

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 ... View more

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 ... View more

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 ........ ... View more

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 ... View more

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..... ... View more

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. ... View more