It is with huge relief tinged with just a little sadness that I have to leave this amazing group of women after just a short time. I had my post MX results today and whilst they found 3 grade 2 tumours and extensive high grade DCIS and LCIS throughout the breast there was no lymph involvement, so just the tamo for me. I still can't quite believe it!
Good luck to all the lovely, brave, funny ladies here, I'll be checking in to see how you're all getting on from time to time, but for now, this is my stop.
jessie bears mummy's- I will be self injecting after chemo next week, I believe it's an a immune booster called g-GSF. it shortens the amount of time your white blood cells are low. zuzy I agree, sometimes there is too much info thrown at us at once and then they don't do what theY say. .... But don't tell me why it changed....
Marie, how is you head now?
Penny, I decided to have my hair cut short before chemo. It will be strange but at least less of a stress when it starts to fall out.
i really enjoy reading everyone's comments , I feel uplifted by so much positivity, thank you all
afternoon all, i guess this is technically day 3, still feeling ok, no nausea so drugs must be working (Although I'm really tired, don't seem to be getting a steroid energy surge!) they talked about injections for me but don't seem to be a having them this time....I'm getting confused what I get with FEC and what with Tax, I wish they'd just take it one step at a time!
Marie, hope you head is feeling better
Everyone else, hope you are doing ok, have a lovely, sunny bank hol weekend
hi there ladies
sorry to hear you had such a bad head Marie, hope its not chemo related, but you are doing so well, go girl - I think I am having the same as you EC so it will be interesting to compare how I am, still not looking forward to it, I really hope I am as bright as you
appointment for the "wig lady" came through today for next Friday, now what shall I go for, still not got the scarf out yet but I feel little happier about it, also having hair cut tomorrow so still gonna be pampered while I still can. gonna meet with some girls from work and they all promised to wear a scarf so I dont feel so bad.
I am so impressed how you ladies are coping and hope that I keep as well and as postive when my turn comes, hopefuly Tuesday should tell me more when but fed up of people saying "I thought they would have done that earlier, my friend had this or that" - blimey I was diagnosed on 21st March, operated on 18 April and possibly chemo in next week or so - I thought with the amount of appointments I have had it has moved on, the only slow part was waiting for results of each part. urghh!!
what is the injection for, I really feel I dont get to know much from my BCN at times, also what does a low hormone mean - is that good/bad?
anyhow the sun is shinning, going to take the pooch out for a walk, she never leaves my side bless her
Penny47, I think it's a one off and stress related.
oh my the mouthwash they gave me I's gross I don't like mint toothpaste that much and this is really minty....
still no SE thankfully I am counting my blessings.
P.s CazD just googled the mountains they look lovely hope you have a great weekend xxx
Marie- has anyone told you that you can get a splint from the dentist which is a silicon impression of your upper teeth which you wear at night and which cuts down the stress on your jaw which may be what causes the headaches. Better for your teeth too! I've had one for years and it works for me. Doesn't stop me waking up at 3am but that could be down to my husband talking in his sleep- this whole thing has been hard on him too. Chill out today and may you be in that part of the country where the sun is shining. Today I wish it would rain here after about 6 so I don't have to water the container plants on the patio....
Caz and Angela-We can jump off that pier together! Bring it on! I shall have worked most of the hours I need to work to qualify for SSP by then- only one more shift afterward and it looks as if it will be timed just right. So I am one chuffed lady. Plus the fact that MD who has a bag of hats for me is dropping in for lunch on Mon on her way back from a wedding-and we will have ED with DH and family here as well, a real treat to look forward to. Smile....
EC cycle 1 day 2
I have the mother of all headaches because .... I'm clenching my teeth all last night ...
and fingers crossed no sick feeling.
will be chilling today as on my own so will be doing what I want...
I didn't realise I would have so many tablets to take lol
Caz d where are the mourne mts ? Sounds good to me though..
Angela - looks like I'll be starting on 14 May so we'll be "in it" at the same time. There have been so many little hitches it might not happen as I think it will. Can't wait to see the Onc on Sat.
Karen - this hair thing is tough. I've cut half my length because the Letrozole has caused some hair loss, and now I'm trying to wedge in an appt at the hairdressers to go down to Sinead O'Connor length. I am just sick and tired of finding hairs (my hairs) everywhere I go in the house. When I brought in the washing this morning every second clothespeg had a hair in it! I really miss the long hair but it will only take 2-3 years to get it back and when i do I'm sure it willbe in better condition because I'm off tea and coffee and booze and junk food. That's what I'm holding onto. Plus trying on my new hats!!! Good luck with this.
OOOO Caz- the Mourne Mtns- only seen them from the plane-they must be wonderful have a great time.
Hi everyone,hope you are all well Alex ( enjoy ur curry)and Marie I'm so pleased that things are going relatively well at the moment for you both
Jane ,jill and zuzy hope you are all managing first few days post chemo I'm really buoyed up by no one appearing to be living in the bathroom with head down loo .think I'm just jaded as would visit a lot of patients with syringe drivers for vomiting post chemo so of course I'm not seeing all the ladies who are managing ok at home so this has made me feel a lot more positive .
I had ct scan today there is a point when they inject you with the contrast dye that she said you will feel as if you have wet yourself but you won't have still had to check the table when I got up as was fairly convinced I had -thankfully not ! That's 1 down 2 more next wk don't think I will feel fully settled until I get those out of the way
Weve rented a house in the mourne mts for the weekend it's in the middle of nowhere so am looking forward to some time with my family and forcing the kids on long walks before chemo starts .
take care moonbeamers xx.
Ps there is a nice choice of hats,scarves etc on annabandana
Lexie 42 should you be driving you may find you are not covered by your insurance? Please check it as I would hate anything to happen?
I was told by my staff health nurse that there is no way I can return to work until all my treatment is over inc radiotherapy if I need it so looks like I will be off till sep...
Elliedog, I was so stressed this morning I was feeling spaced out and it was all for nothing the staff are brilliant and there were even patients there that I knew.
im defo se free as I'm taking the tablets as told. Hubby said that's the first time in my life that I'm doing as I'm told lol
Marie xxxx and hugs
Just typed a message in the garden and lost it as my iPad died :(. So ill start again. Can't believe there's 25 of us now.
Marie - hope you're still SE freeish.
Melrose - I think it was you who said "I just want to be normal" I can second that!
i woke up this morning after a good sleep and felt quite bright eyed and bushy tailed. I can taste tea and coffee again okay. It wasn't until I parked up for work and started walking to the office when it hit me, legs felt like lead and brain started going mushy. Everyone liked my new short hairdo At work tho, so that was a boost. Left work at lunch time and slept for two hours When I got home. Daughter came home and made me a nice cup of tea, so partially refreshed again. She's doing her GCSE's so she's tired too! Now I can't remember what I typed when I was in the garden!
Oh, the injection yesterday, that was fine, it's a really small needle, didn't hurt, made me feel like a druggie tho. Lol! Still taking the tablets, no sickness, just knackered! Going out for a curry tonight hope I don't fall asleep in it.
Hi Marie.Well done. Cant believe how well all of you are doing so far with your first chemo, you are so strong. This is really given me the courage to approach my first chemo in hopefully a more relaxed manor. Nurse spoke to me today, they plan to get me in for my appointment with the onc next week and do all the other bits they need to do before the chemo starts the following week. So full steam ahead. Jessiesbearsmummy I don't think it is silly worrying about losing your hair and it certainly isn't about being vain. I thought I was ok about losing my hair as I wear it very short anyway, but now chemo is approaching it is starting to bother me a little. Its about standing out and looking different to me. I have two boys 14 and 9 and although me losing my hair isn't a problem to them it sometimes bothers me they will be asked questions from other children which means they cant avoid the subject even when their not with me. So no your not being vain or silly, but it will come back probably stronger and thicker. This time next year we will all have lovely locks of hair and preparing for a holiday.
Lots of hugs
I was in there an hour and a half but the treatment was not all that time it goes on weight and height and let's say I am we'll above average weight so I had a lot to go in lol. The bigger you are the more you get nice that hey.....
They gave me a relaxant and anti sickness tablet and I have to say the worst bit was walking in there..
Just open it try them on let your daughter play with them on you! I have short hair but am not bothered about losing it as it is my battle scar ( but only a temporary one )
can you have the cold cap ? A lady today had it and she was doing her last session and still had a full head but then you are in there longer. I didn't want to be sitting in there for up to four hours just to save my hair from falling out when I could just get stress and it falls out anyway lol
I would love curly hair mine is so straight it's like a poker...
well done Marie - I too am having EC but not sure when it starts, see onc next week so hopefully know more then, tell me more, how long does it take, painful? any tips? you are so brave, you ladies are all brave 🙂
I have to say that I love the idea about the pandora charms, I got bought the breast cancer one by a good friend the day before my op and I have only just had my birthday and bought the bracelet so I too have suggested to my other half that it would be a much deserved gift after each chemo session, my daughter said that could she have one after each session - monkey (shes 10)
I have been keeping busy today just had first asda delivery, should have done that long time ago
then the post arrived............... first a letter for an appointment with the consultant for 2014, then 2 packages which I know what they contain and I cant bring myself to open just yet, sounds really silly doesnt it that although I have accepetd it somehow reduced me to tears, I will open it just not yet! I have a hair appointment on Saturday and still not sure what to do, I had long hair down my back, had it cut to just below shoulder length as soon as i was diagnosed but not sure what to do, I like to have it coloured too to cover up the roots lol, so I am not sure if to cut and colour it at the weekend or just to see what happens, I have taken many years to get to this point as my hair is naturally curly and as child and adult always had it cut really short and since the invention of GHD's i have grown it long and now its been taken out of my hands, very vain I know but I really am bothered about losing my hair. Does thick hair still come out just as easy, but I dont think I could suffer the heartache of it coming out in lumps but if I cut it and there is no need - oh what silly things bother us !!!
well gotta go so catch up with you all later
EC CYCLE1 DAY1.
well ladies I have to say that was painless nothing to report on se front yet but will wait and see came home with a dispensary of tablets, two different types of mouthwash,and injections but ive opted for the nurse to come out and then if I feel confidant enough I will do it next time
Reporting in after chemo 1.
Welcome to Sarah, and great news on your embryos Jill!
I followed all the advice on this site, and I have to report that so far so good. Everyone else seems to be on FEC. Is anyone else on AC like me?
Emma and Rachel- with friends it is so different from person to person. Some, because of my story, are now terrified to have mammography! Others shy off the subject completely. Men and women but oddly enough the men have been very upfront! I think I am actually going out of my way to get in first with asking them how things are going for them before we get onto me. It's hard work especially when you are feeling tired or cloth-headed.
One positive thing with my friends: My MD is walking for Maggie's Cancer Care Centres (the one by the ONC unit will be my husband's office every third Tuesday!)and she put it on Facebook immediately after I went public about my BC, so a lot of people who hadn't picked up on my little hints (eg "This year I will mainly be wearing Magenta") went straight from my post to her post and bounced onto her justgiving.com site, The messages posted there are some of the most cherished experiences of my journey so far. Maybe friends need something to do, and then we can all be normal with each other?
Its a sunny morning here but doesn't seem to be helping my mood today. Very nervous about tommorrow, MRI, trying to be positive around everyone but secondaries keep going through my head although the doctors are 98% sure it is not just want clarification. Need to take more Bachs to keep me carm.
Marie hope it all goes smoothly today, glad you spoilt yourself yesterday thats what we all need at the moment.
Lots of hugs to everyone
it is BC pink I already had the dangly ribbon one from previous so I have bought two bc glass beads two cherry blossom cz sparkly beads and two flower clips I think I could have some more on but they Will have to be pink or have a meaning to go on this one and what do you know it's my birthday on Monday think I will ask for money lol xxxxx
Wow Zuzy they start early in your part of the world! That's my style!
Here's a post I prepared earlier:
Good morning Moonbeams...This is OUR MONTH!
Awake at "the wrong five o'clock"'-waiting for co codamol to kick in. Just discovered this forum loads faster for me on iPhone- or is it the time of day? Except it won't let me post. Maybe if I lived in an area with 3G ....
Just done head count of our group and we are about 25 counting me: we are---(sorry if I've missed anyone. Or included anyone wrongly)
Just had a thought-as I am to have chemo "fore and aft" (the op) I'll be in another lot of lovely ladies in the New Year-possibly some of us will be with me?
What did women do before this community/forum? I thank God for all of you and our support for each other!
Sent from my iPhone
ps just this second had phone call from ONCsec- appt Sat at 11:30 on the ward! Sounds like they shoehorned me into his day!
FEC-T cycle 1, day 1
morning moonbeams, well first one is done! Apparently I have weak and feeble veins so they struggled to get the cannula in (now have appt to discuss picc lines) which was a bit stressful but once that was done all went smoothly! didn't sleep v well, was awake feeling hot and then cold from 1 until abou 5 then had a bit if a snooze For a couple of hours, just had tea and toast and drugs, which seem to be keeping nausea away so hope that continues!
Emma, good luck for your results
Jill, please come and find us on FB if you haven't already, there are others going through the same thing, glad first one went well and let me know how work goes, my boss insisted I have this week off but am hoping to go back sometime next week.
Deborah, how are you feeling?
good luck anyone starting today or with SEs for anyone I've missed (I've lost track of names and dates!)
off for a snooze on the sofa now!
gosh we all deal with so much....Melrose, I have the same problem, friends constantly want to talk about my cancer etc and some of them don't tell me anything about their lives unless I really push. Work friends are a lot better and keep telling me pupil funnies!
Marie, good luck for today, I will be thinking of you. I still have a week to wait til 1st chemo. Yesterday, some hats I ordered online arrived. I decided to be prepared! Got some great turbans too!
Have a good day everyone and enjoy the sunshine if you have it!
Marie I like your style. A pandora for every occasion. Is it bc pink? I've just treated myself to some Ugg boots. Never had a pair before as too expensive but a girl has to be cosy and comfortable in these circumstances! 😉
Strange you mention vertigo. What does it feel like? When I was in the 'waiting room' and before my op I had a really cotton wool head and felt as if I was off balance and woozy. Is that what it is. I put it down to stress and started to use the Bach rescue which did help.
Check in later and let us know how it went. I'm off for my results today. Mixed feelings 😞
Jill glad your harvest went well (sounds strange vault we know what we are on about) and go have to confess this is my third such bracelet!! But this one is only for this journey the bought hubby bout me for our 25 th wedding anniversary whilst on holiday in Australia so all the beads are sentimental ones. Where this one is a journey remebeonegetting one.
Mills 1did you meet a nurse called Sharon dark hair and scatty as hell she is a card maker that I know.
Melrose 15 I know what you mean I have a friend 3 years down the line been for bone scan and she didn't want me to worry about her but I worried more because she wasn't telling me and all it was is that she has the bones of a 70 year old ( she's 56 I think) so it's not good but it's not life threatening and I was worried she had cancer back . But she wouldn't have told me unless I had insisted. Oh to be normal again. I think I have to inject myself as well 😞
well today is the day don't know how I feel I have a bit of vertigo as well at the moment think its to do with hay fever went to staff health yesterday so will mention it before they start hope it won't put trfeatment off....
I had also forgotten there were two 6 o'clock s in a day that was a shock to the system I can tell you .
nhope everyone is ok today lots of hugs to you all
Have been feeling really irritated the last few days. (due on :/) Whilst I am extremely grateful for the love and support I'm getting from friends and family its seems that 'cancer'; be it mine, a friends, an aunts once removed, is all they can talk to me about. The constant questions are getting me down and when I ask about them and what's happening in their lives, I get the response 'oh you don't want to worry about me' Well yes! I do because I want some normality in my life. I don't want to be defined by the cancer. I want our friendship to be the same as it was before. Does that make sense!?
Deborah and Lexi - glad you both seem to be doing well. Can't believe you have to inject yourself Lexi 😞 Shame that tea and coffee tastes weird. Have you found anything to drink that tastes ok yet? I don't know about you but I drink vat fulls so that's going to be hard. Hope tomorrow is just as good for you both.
Aly - 500ml Fluid! Wow I'm surprised you didn't pop. It's such a relief, isn't it!?
Karen - I hope you feel better x
Caz and Angela - good luck with the scans.
Jill - So pleased to read your post and to hear some good news. I hope you have a good night and the next few days are s/e free. Number 1 ticked off x
Marie - Enjoy your bracelet! And enjoy adding to it. That's the best bit 🙂 Good luck with round one. I'll be thinking of you xx
Welcome to Sarah.
Big hugs Moonbeamers and sleep well xx
Nanniereeree, Hi, thanks for the message. I can't find out how to private message someone so was just gonna say i love looking around craft shop at Taverham but have not been to any crops. Sorry i know this is not about original subject but don't want you to think i'm ignoring you lol x
Hello again ladies, well 1st onc appointment went ok, i think, cos i can't remember some of it (lol) so much info to take in. Anyway, first i'm having FEC then everything else but can't remember what order. All were lovley staff and came out feeling overwhelmed but positive, took one step indoors and broke down, thinking if i will ever get through this then thought of all you other ladies out there doing just that, and now ok again. All this certainly a rollercoaster! Went and got some scaves after and gonna make some of my own. It's good fun serching for scarves in charity shops, you never know i could start selling them. Sorry if i don't yet address any of you by name yet but will get to know you. Best wishes to all of youxx
jill im so delighted you have 6 little embroyos in the bank that is brilliant news and something so positive to look forward to when this part of the journey is over good to hear you are getting a real hair wig unlike mine which i have been advised to avoid opening the oven door when wearing or may find it running down my face lol.
Aly cant believe you got 5oomls drained of im sure that has come as a big relief good luck with the oncology appt on 3/5 hope you can get started soon All the best to all the other moonbeamers take care and enjoy your evening xx caz
alex so pleased that you are still feeling ok xx
Welcome back Sunshine P, you sound amazingly strong. Can't help it, but I shed a few tears reading your post, but we are all behind you with extra strength and support when you need it. I'm not really very good at this, but I admire everyone's ability on this site to give lovely words of hope and encouragement. Tears again, what is wrong with me.
On a positive note, I've just had a swanky new short haircut, so hoping to show it off at work tomorrow as long as fatigue doesn't set in. I guess this first cycle is the hardest as we don't quite know what to expect. Oh just had a thought I'm probably an emotional wreck because of the steroid tablets. Injected my leg myself this afternoon too! That was a first and I don't like needles much, that was my immune booster.
Anyway must go and see where my tea is now.
Keep well moonbeams. Alex
Jill, just wanted to say so pleased that you had success with the egg harvesting. Amazing news. Also there's a fantastic Facebook forum that has been set up specifically for 'young' women with breast cancer. There's a thread in the young forum on this site but you can also find it from a Facebook search for 'younger breast cancer network (uk)' alongside the May Moonbeams I've found it a fantastic source of support and info. It's completely private so no-one outside the group can see your posts. Obviously I'm addressing this to all Moonbeams but as you'd mentioned you were 32....Xx
It has been lovely weather today which is always a bonus. Been out and about with my lovely husband, treated me to lunch and we went for a lovely walk. Had my echo scan today in preperation for taking my Herceptin. Thought I would get away with no hospital visits today but got a phone call while I was out saying they could fit me in today. Just MRI on Friday now.
Lexi - Cant believe how well you are doing I really hope it goes as well for the rest of us when the time comes.
Deborah - again doing well, it makes me feel a little easier about the chemo and its possible SE
Jill- You are going through so much and being so brave. I can tell by the way you write your post that you are such a lovely person and although this isn't the greatest time at the moment you are strong enough to come through just like the rest of us.
Cazd - Good luck with your scans. I know how you feel even when my nurse tells me my MRI is nothing to worry about I still read into everything.
Only a short post today, lovely husband cooking dinner so of to be spoilt.
Have a relaxing evening everyone.
Thanks so much for the cold cap advice Mejane. Looks like I will defintely be joining the Moonbeams had my post op today. Good margins (2cm) on both tumours and nodes were 3/20 nothing scary(er) found. Chemo followed by Rads and tamoxifen. Feels so good to know where I'm heading even if the road ahead is going to have some bumps along the way. Meeting my oncologist on Friday to discuss my chemo options so all advice from those that have already been there very welcome.
Emma good luck for your results tomorrow.
PS the boob was drained. 500mls or a pint in old money. Ahh the relief. although now my boob looks like a dehydrated prune :(!
Meant to say....
Marie, I am a Pandora fanatic and I have recently treated myself to some pandora earrings on the basis that they may help detract from the hair!! 🙂
I was thinking that I would be about to justify treating myself to a new bead after each treatment - will help me feel better obviously!! 🙂
Not sure my husband agrees but he hasn't said no which is a bonus!! Also, a motivator to keep working as much as I can!! 🙂
Now you have 5 beads you will want more, or maybe a safety chain!! It's addictive I warn you but so please you treated yourself to something lovely - it can represent the time that you met lots of lovely new people and made some special friends etc.!!!
I hope today is a good day for everyone!I haven't checked in for a while and WOW, there are now so many of us! I love how much this group has grown, now full of amazing ladies that are going to kick C's butt!! Whilst I know none of us would chose to be here, I know that for solidarity, strength and for giving each other those reassuring words of encouragement when you really need to hear them, this group will be invaluable!
I have had an eventful couple of weeks as I have been through the egg harvesting process - it was a welcome distraction from the limbo of waiting after surgery and before chemo starting but it also sent my hormones all over the place which was interesting at times! I think I am now not sure what normal is for me and I guess it may now be sometime before I feel I know what that is again. I went last Monday for the little operation and they retrived 11 eggs, one of which was not mature enough to use! I had a sleepless night Monday as we had decided to freeze two eggs as eggs and then try the rest as embryos. I tossed and turned worrying that none would fertilise and then I would have to ask about delaying chemo! I didn't have the best experience with my oncologist so the thought of having to go back didn't inspire me in truth! Anyway, at 10am I had 'the phonecall' and thank goodness 6 of the 8 eggs had fertilised so we now have 6 embryos in the bank too!! I don't think I had cried that much since this whole experience started!
I guess I have had the conversations in my head where I say you can take my boob and my hair (albeit I would love it if this was just temporary and I could have it back very quickly please!!!) but please let me keep my chance of being a mummy! Fingers crossed I am one step nearer to this now and it will hopefully be something to focus on after the treatment and when I am feelng fit and well again! (Now crying whilst typing - I knew this would set me off!!)
I had my first chemo today so one in the bag - I was pretty anxious and scared too, bit teary but the actual experience was easy! I was out in literally just over an hour with no issues at all other than my arm feeling a little cold - quickly remedied by a heat pack! Called at Sainsbury's on the way home and now sat on the bed feeling no different than I did this morning! Still, I am going to agree with the others and strictly stick to taking the meds when they tell me, to resting and hopefully, to making it into work for just a few hours tomorrow. They say that your immune system is lowest between day 7 - 14 so will probably try and work from home then so I don't go too stir crazy!
I am scared stiff about loosing my hair - I have long, thick hair and have never had short hair - I haven't had it cut and I think I am just going to see how I feel when it starts to go -I guess I may get fed up with it falling out and that will spur me to do something which may be better! I am having a real hair wig made on 27th May so will have to do something different inbetween as I doubt it will last that long! I thought real hair would give me a bit of normality as I can wash it in the shower as normal and straighten or curl it with straighteners as I do now! It's funny how much you crave normality when your world is turned upside down!
I am finding it hard to be around my friends much as whilst I love them dearly, I just feel so isolated - they are 32 and getting on with their life, planning for the future....I am 32 and trying to fight for my right to have a future and praying that this treatment grants me that opportunity! It just seems polls apart but I hope that I will be a better person for this journey really making me realise how precious and how fragile life is!
From what I have read so far I know that we will all get through this and be stronger for it at the other side. I will just be holding onto the thought of one day having the chance to give my husband a baby will I know feel like such a gift that I will treasure probably that little bit more because of this experience!
The support and empathy from everyone is truly incredible on here and as it seems I am one of the first group of ladies to start chemo, I hope I can be useful in terms of giving you some SE updates! So far.....all I can say is .......so far so good!! 🙂
Just as a tip although its obviously not my tip - there is a product called OnicoLife which is for your nails - it is a gel and I think for anyone having Taxotere, it can help warn off infections in the nail beds and help protect your nails! That together with black nail polish is what I have seen used and recommended! I am going to try it anyway, thnk just doing something can give you a sense of control back!!
I think I have written war and peace in this post - making up for lost time I suspect!! Sorry for rambling! For those of you awaiting appointments, they will come!! I started chemo exactly 2 weeks from my oncologist appointment so not long - it may have been sooner but had to wait for the harvesting! Next appt is 22nd May so all being well I will bag two this month! I am so counting off the days - it will probably look like a calendar that a convict has on their wall in prison!! 🙂
Next challenge - scan next Wednesday and whilst they say it is routine I am scared stiff it will show something! Someone once told me to worry about today as tomorrow will take care of itself and I am so trying to remember this now!!:-) CazD - hoping your scan goes well, keeping everything crossed and I am sure it will!! 🙂
Don't know about you guys but I still can't believe this is happening to me but I do believe everything happens for a reason so I just have to trust that all will become clear!!
We will get there ladies, scary stuff I know but we will be posting this time next year of summer holidays and new hairstyles and those are the thoughts that will carry us through!!
Love and big hugs to all - I will keep you posted as to how I am going!!
hi there ladies, welcome Sarah (says me only joining yesterday lol!)
I have got my oncology appointment for 7th May - so looks like could be a moonbeam ?? I am told I will get a referral to the hairdresser lady from the hospital but in the meantime I have ordered a scarf, wonder if typically this summer we will get a lovely hot summer just when we have wigs to make us even hotter? not decided what style to go for yet. How soon do people generally get onto chemo from their oncology appt?
not felt too well today, felt very sick, just hope not coming down with something but gotta get some energy from somewhere but this awful numb tingling pain is stopping me sleeping - enough of me complaining
hope everyone who is ok today and not feeling too bad, I am not looking forward to chemo, I dont like feeling or being sick (bit of a baby I am afraid) I can take pain etc but feeling sick - not good.
take care girls
Hi Sarah, defintely sounds as if you will be a moonbeamer hope your onc appt goes well today and you will have a clear plan for the coming months .
Alex hope everything continues on as well as they have i will get my wig voucher next wk the lady who does it at the hosp has a MBE for her work so am hoping for something good ,xx caz
Welcome Sarah! Some of us are still waiting for that ONC appointment...my letter got lost so I rang up the BCN and she will get admin to fax it just to make sure. So over til next week I guess. Looking forward. Hope I won't be relegated to June...
Hello May Moonbeams, I am new to the forums (this is my first post) and have been reading your posts for the past feww days trying to decide if i should join you all. Anyway i have taken the plunge! I hope i will be a MM too, my first onc appointment is today, so we will see. Hope so! Look forward to getting to know everyone and take care.x Sarah(Norwich)
That sounds lovely Marie, you deserve it. Loving the black jokes by the way. :). Hope everyone's feeling good today. I went straight into town to look at wigs after yesterday's chemo, but havent bought one yet. Going to get my hair cut shorter first as Oh says he needs to to get used to me looking different in stages. I quite fancy a radical new look!! Think I maybe over did it a bit yesterday, didn't sleep too well, but took all the tablets and made it into work today. They all think I'm amazing, but I'm just trying to keep things as normal as possible.
Deb, do you find tea and coffee strange. I've gone right off it.
Hi Caz d - I know some units don't all have the Cold cap yet, but some do - but don't offer it unless you ask!
If you are interested in trying the CC, do ask your ONC for it as I know some hospitals have it and only give it if a patient knows about it beforehand - and asks for it - which I did.
My friend had heard of it and I googled about it so went into my post op meeting with my ONC well prepared. There are only two Cold cap units where I am being treated, but if girls ask for it, they will do everything they can to accommodate everyone. Next year the unit is expanding and so they hope to increase the number of CC units and to correspondingly expand the team on the ONC unit too.
The team work like Trojans and are very overworked already, so I personally have great admiration for all of them, always kind and helpful, no matter how busy.
I know from talking to a couple of nurses there that at moment they can really only cope with the two units for CC ladies as the appointment time is much longer - a 5 hour slot is needed, as the CC must stay on for 2 hours post Epirubicin (the drug that causes hair loss). There are currently a limited number of stations in the chemo suite they currently have, so I would guess that the nurses are not going suggest the CC to anyone unless a patient actually asks for it, both because of limited space in the unit and also because of a current lack of resource. I hope to do some fund raising at some point after chemo and rads to help raise funds for the purchase of more CC units for the new bigger unit once they move into it.
Best of luck with your treatment, with your wiggle or the CC, whatever you go with with, Caz d.
I'm not a regular poster on the forum every day, but post from time to time, but I am an avid reader!
Everyone who posts here has helped me tremendously in terms of information about BC since I started my treatment and this pretty challenging and difficult journey we are all on. So general thanks to everyone who posts here, both for all your information, help and support - and generosity with your time - I know how long it takes to successfully get a post up on this forum at the moment! For the valuable information you all give every day, very very many thanks. and the poems too, Poems Gallore. The very best of luck to you all. XXX
Morning ladies hope all going well
.Deborah im so pleased for you that so far things are going ok gives us all hope coming behind you.
Alex i hope you went ok overnight
maree hope you have good day and get something lovely with your vouchers
mejane we dont get offered cc at our unit so its of to wiggy town for me
Aly hope you get some relief once the boob is drained and hopefully some answers as to the treatment ahead.
Janey good luck for this afternoon , take care ladies im doing a bit in the garden today .
Of for lung,abdo andpelvic scan tomorrow getting waves of anxiety at times but under control at minute hope it stays that way xx caz
Hi, having started this cold cap thread a while ago, I thought I'd give anyone interested in the CC a general update on how the Cold cap has been working for me - so far! I remain cautious of course as you can lose hair right till the end of chemo and beyond for at least 6 weeks after finishing chemo.
My treatment comprises of chemo (FEC 75 x 6) for adjuvant BC, I had a lumpoctomy and SNB (no nodes affected) in November. I am now 2 days post FEC 5 - with just one more fec to go on MAY 20th, then goodbye to feccing FEC 😉 !
This update is really aimed at anyone thinking of trying the CC - or wondering whether to continue with it. I say this because you do lose hair throughout the treatment, even with the CC, some more than others and everyone is different of course..
After FEC 2 I lost quite a bit of hair from the crown of my head and thought this was it! - the beginning of a major shed and I considered giving up. But fortunately this proved not to be the case for me. I was encouraged to stick with the CC, mainly because of this thread - by the ladies who responded on it (Cybele, Sanytoes, to name name but a few). Thank you ladies.
Like many ladies have described on the forum, after FEC 2, even on the CC, I also had a sensitive and painful scalp in the area that I shed hair from the following day, so recognised beforehand the sympoms so expected that the hair would probably fall from there - and it did. Still there was enough coverage there to encourage me to persevere. I had read that some people became very thin on top, sometimes bald on top, so I was prepared, if very upset, for this also to be the case for me. Hence starting the CC thread, other ladies a few cycles ahead of me really encouraged me not to give up.
After FEC 2 hair loss settled down a lot and whilst I continue to lose hairs when I wash it (about every 6 days) it is only a little more than usual. I have stuck rigidly to the instructions I was given at the start, leave the hair alone basically, let it dry hair naturally and use no other hair products. I have adopted a more casual style and have got used to leaving it alone, it has continued to grow, if a little slower, during chemo and I have had to have the fringe trimmed, but left the rest of it alone. Whilst the hair on top is a bit thinner, it is enough coverage and is even a bit thicker than after FEC 2. I say all this with some caution, with at least 6 more weeks to go before the hair stablises.
So, if you are about to start treatment and you are considering trying the CC, do give it a try. It is not a bed of roses and is painful for the first 20 mins or so, but after that, for me the scalp seems get used to it! For me after 20 minutes it is nolonger painful, just a bit uncomfortable and tight under the chin. But I have someone with me at every session so this is a welcome distraction and helps the time pass quicker. And I was determined from the beginning to put up with whatever I needed to, to try to keep my hair.
The CC has enabled me for much of the time between treatments to feel normal, not to look like a cancer patient, not to have to wear the wig I went to great lengths to get (it sits still elegantly on the wighead - forever i hope!) 😉 and to go out, albeit a little greyer, a little less groomed than I normally am, but it has made the chemo that I started with such dread, to be a little easier to bear.
The very best of luck to anyone using the CC now - or about to start. I really hopes it works for you. MJx
Hi Ladies, just a quick note to say good luck to those of you who have started / are starting chemo this week, you'll never be far from my thoughts. Off to the consultant this afternoon can't wait to have my boob drained and finally find out what road lies ahead.
Welcome to Karen, and thanks to Meggy, Marha and Yvonne for their good wishes & advice.
Like Alex I had my first FEC yesterday and it sounds like we both had fairly good experience of it. There was a tiny bit of burning with the red one of FEC (think it is the epirubicin), but as it was being injected into the canulla by the nurse rather than by drip she was able to slow it down and then it was fine. It was all done within a couple of hours and I felt fine. Just a wee bit woozy, but think that was just because I'd been a bit anxious in the morning and it was all new.
I went for a lie down at 5 and was a bit restlesss, think it was probably the steriods. I took some anti-sickness tablets about 8 and then was fine and had a good nights sleep. After breakfast took 2 lots of anti-sickness and steriods and feel okay, odd little wave of nausea now and again but nothing major.
I hope it keeps like this!
Am taking good note of the advice from others re heading off sypmtoms by keeping to the meds, and also taking temperature and just generally looking after myself.
Some foods taste a bit funny, even bread and butter last night tasted like cardboard.
Good luck to Jane starting Thursday and anyone else on the starting line.
Jane black humour is in my house too hubby calls me cyclops and says I won't feel a right tit anymore lol....
Rara sorry to hear you have cording too I've persevered with my excercises and it is getting a bit easier will discuss with BC Nurse Thursday ay chemo.
Caz glad your tour went ahead .
Lexi had your chemo went o.k hope mine gets as well !
Karen welcome to the May Moonbeams
Angela I plan on having a good day as its the last before Chemo lol