Hey Lady34 - hope you manage to have a good birthday tomorrow despite the obvious. Mine was last week. The cats look after you as much as they can.
Great ostrich kat you’re doing normal things.
Hi everyone. It’s my 3rd day after chemo and I’m feeling good. The meds I’ve been given of 3 day supply I’ve been ok on. The as and when needed sickness tabs I’ve only needed a couple of times. Did take the twice a day ones though. The morning injection is a doddle now can’t feel a thing.
Ive stayed in around the house all the 3 days mainly because I read of immune system being low and needing time to build up again so I’m not risking infection or germs. But drastic it sounds but I enjoy my home. I’m catching up with writing and cooking nice meals bathing and relaxing.
Hubby back at work so just me and my cat 🐈. Didn’t sleep well first 2 nights but didn’t panic as aware all the meds are new to my previously med free life. Hardly take even an aspirin! Last night hot bath and slept well.
Quite hungry so eating what I want. Starburst fruit chews helping freshen my mouth and encourage me to drink water.
All in all but down as it’s my birthday tomorrow but up also cos if I hadn’t found this tumor now it would have been much worse to manage.
Love to all
Im still here too 👍
been working a bit today and met my sister for lunch now at my mum amd dads and my brother just cooked 😁
Not much comment on here today. Has everyone gone off to Facebook now? Will I be left here alone as not keen to shift onto Facebook?
Dreams... Normal? Can I borrow some please??
Woke up this morning after a dream that I was on a posh garden party, huge gardens, beautiful sunshine, families wondering around, really nice... This bloke in religious robes comes up to me, starts talking, then just starts having a wee next to me! 😲
I wake up as I'm walking away looking for a shower....
I am NOT going to attempt to psycho-analyse that!!! 😂
I can feel your anxiety and fear and anger through my phone. I wish I could give you a real life hug.
I know you don't want this to be your reality, I kept hoping I'd wake up and it would all be a dream. I'm my first couple if weeks sleep was my only sanctuary coz it was the only time I wasn't thinking about it and could have normal dreams where everything was as it used to be.
We're all terrified really, but you will come through this feeling of hopelessness and accept it for what it is. Your situation sounds more positive than you're ready to accept, they've got it out, focus on that!
Please phone and book some counseling.xxxx
Vaneysha, please ring your unit and discuss all this with the bc nurse you have been assigned or please ring the nurses on here or use the someone like me facility on here, they will help you. Everyone who has chemo faces the same, it is fear of the unknown but you will settle into a routine with it and you will get through it if you decide to go ahead with it, but you need to discuss all your concerns with your team, it’s their job to support and guide you through each treatment and take care if you. Remember these are professionals who have seen it all before and know exactly how to guide you through ❤️💕💕✨✨Shi xx
Time is all I've been given lately, bags of it, and it's now got to a point where I've run out of time and the anxiety just gets worse with the waiting, not better. I'm never ever going to be OK or accept chemo but cancer doesn't care I suppose, I feel backed against a wall now, I've basically got no choice but to either start it on Wednesday or back out for good and then be constantly anxious of it returning. I'm seeing my gp tomorrow but there's no magic answer or magic pill, the only way my anxieties are going to be alleviated is by gritting my teeth and going to that first session. I just feel so overwhelmed hearing so many side effects and not even just from the chemo but from the stuff like the bone injections and steroids, everything has so many side effects!! And it just seems like a full time job with so many rules, drink water, go for walks, constantly check your temperature, avoid sick people, do this do that, and then with the scalp cooling all the rules for that, it's so so much and I just want to hide in bed to be honest.
If I can get the first one over with then the next one might not be so bad but it's actually voluntarily walking into that hospital and allowing them to do this to me I find impossible to even consider.
I know this will sound mad but you do settle into a routine with chemo, if your antisickness meds don’t work call your rapid response they will tweak them till they get them right, I had no sickness and I didn’t loose taste either. Keep drinking about 8 cups + of water a day, helps kidneys and liver during the chemo. Check your temp regularly, if your wee burns and no temp it will need immediate antibiotics it could be a uti, during chemo do not attempt to treat yourself as you would do normally, you need to ring your teams straight away. Keep hold of each other, I know you will you are all amazing and get your meet up planned for when you’ve all finished all treatments it give you all something to look forward to. Us oct17 gang had a weekend in London 👍. I had a post it up in kitchen and tucked each one off and the bell in the unit I used to tell it I’d be ringing it soon, helped focus on goals 💪💪don’t know if that will help anyone, but thought I’d share 💕💕✨✨Shi xx
Fluffball, thank you for sharing all of that. Sounds like you have had a very tough journey and thinking of you. You also sound like a very strong woman and so impressive.
As we've all said, our paths, anxieties and prospects are all different. We all have to do what is right for of us as individuals. Veneysha, sounds like you just need a bit more time. I'm assuming they're recommending you get on with it, but wondering if you could try to give yourself a bit more space to help get the anxiety under control?
The one thing my surgeon said to me when he broke the news about chemo is that we wanted to talk about a longterm life expectancy and as I'm still young (well, JUST in the young bracket by about 5 months!) I should go for whatever is suggested. That was the impetus for me go for it, but as I say, everyone is different. I start on the 17th and I'm absolutely terrified too - fear of the unknown.
BTW, my name is Nicola. Feels strange to message anonymously. x
Vaneysha, please phone the ask the nurse line and tell the everything you have put on here, they are trained nurses that will be able to answer all your questions, others in this chemo thread are just starting their journey as you are and are finding their feet day by day as you will, they can 👭you but it’s the nurses and the someone like me option that will be able to give you guidance also you should be speaking to the bc nurse you have been assigned at time of diagnosis, it’s their job to support and help you and even if you say the same thing a million times, they are trained to understand and advise you in a professional capacity. Hope this helps 💕💕✨✨Shi xx
agree with everyone here. We’re all facing the unknown arming ourselves with as much as we can learn and know about our diagnosis and treatment options. Yet we still have to bear the unknowable eg. How we uniquely respond to all of this. This uncertainty is hard for us all. I guess we’re all holding on to what we feel will give us the best chance to live longer.
The work of finding our way through our emotional mental and physical responses in itself is exhausting.
Wishing us all courage and strength
i can only echo what everyone has said! Terrifying times and so many difficult and complex decisions to make when anxiety is quite high! Ultimately the decision is yours and it needs to be about what feels right for you - is seems you have had long conversations about it and you need to make sure you understood everything so you can make an informed decision.
For me I have just been diagnosed with triple negative bc (1 lymph node involved). Chemo before surgery is my treatment plan (even though the details of the chemo have not yet been shared) - like all of us I am petrified of chemo I.e losing my hair, will it affect my nails, what will be the side effects, will i get a good response. So many uncertainties that keep us most of us if not all awake at night. It is **bleep**ty and it sucks and it is not fair but ultimately I want to be able to live longer so I have to give a good go and try to be as positive as possible (I am an anxious person so easier said than done and right now struggle to hold on the positives but I need to keep reminding myself).
If you decide to give it a try like it sounds you are i hope your first session won’t be too bad - this will also help with reviewing your decision.
Sending you lots of positive energy
we are all here to help each other along the way.. and believe me it’s hard for us all. Whatever you are feeling, so are we!
im pretty sure that we are all hoping for the best possible outcome and the end result bring survival!!!
chemo is essential and if it means that you live, then it needs to be done.
side effects and hair loss will be temporary... in a few years from now, all this will be a distant memory I hope and we will be so much stronger for it!!
life is precious.. do whatever you can to survive!!
It’s going to be a bad year for us all, but we will overcome this and look forward to the rest of our lives!!
stay strong and positive! We are amazing women and we can do this!!
Thank you everyone for your words of advice. A couple of hours ago I was already constructing an email to my team to tell them to stuff the chemo altogether. Im just really upset the impact its all going to have on me, my self esteem, my social life (I won't leave my own bed if hair goes) and most of all my amazing husband and children. I'll be afraid to go anywhere near them thanks to preschool bugs floating around everywhere at this time of year, plus if I'm bald, I dont want them to see me looking so vulnerable.
Chemo is the right thing to do. I've been back and forth on the PREDICT tool working it out and wondering if its worth all this pain. Hair loss by itself is only one part of it, it's the growing back and how long it will take for me to look like me again that will be so painful. I thought I'd found my compromise by accepting 2 sessions of taxol and then jump into herceptin but then how much risk have I left myself open to by not completing the course?
I've taken a lot of anti anxiety meds this afternoon and tried my wig on (I hate it) and even considered shaving my hair off anyway to avoid hope building from the scalp cooling only to be devastated if it fails. I feel like a complete burden to my amazing husband who has taken on all the childcare and housework leaving me to mostly wallow in bed and overthink and cry.
I think the only way I can make this work for me is to have two sessions and start the herceptin. If the side effects don't bother me as much as I'm expecting them to, and my hair does by some miracle stay out then maybe I could tolerate more but I think it's better to keep expectations as low as possible. I am now accepting that chemo is there for a reason, they don't want to just poison people for fun, there's a justification for it. I guess I'm just resentful that I have to be one of these people.
Firstly, you don't sound like a petulant five year old to me - at all. You have perfectly valid fears and questions regarding the treatment plan they are proposing for you.
I had different reasons for refusing chemotherapy, which I won't go into here as it won't help at all, for me the hair loss is not an issue as I have bouts of alopecia universalis anyway, I've been warned this will probably make it permanent, but hey, I've suffered since I was 7 so believe me it's a non issue for me. In that I consider myself lucky, what for most people is the scariest, and I do mean most, sooo many people have huge worries over losing their hair and feeling of identity especially as a woman through this treatment, that your reaction is far more normal than mine! 😁
When I turned round and said I wasn't having chemotherapy, my BCN took over two hours with me going through my fears and listening. She realised I had thought the consequences (as understood at the time) through and was prepared to accept them and accept the (then believed to be small) increase in the risk of recurrence. We are responsible human beings with our own ideas on what is important within our lives to us - I have read stories from people going through hell within their treatments in exchange for a longer life and I know that this isn't a decision I would ever make, but I respect anyone who does choose it - it is entirely each person's own decision and should not ever be judged by someone else.
The only reason I accepted the chemotherapy is because I had blood markers coming back showing that my cancer had already spread - their was no evidence of tumours in my CT scan, but their was evidence within my blood - they took out five tumours - all over 20mm, the largest was 75mm and there was also cancer in my lymph nodes although only 2/20, EVEN at that, before the blood markers I was refusing chemotherapy, the blood results were what swung it for me, it brought my diagnosis from stage 3c to probable stage 4.
This week, that has now been confirmed as stage 4, so it looks like, for me, the chemotherapy is now essential and I start tomorrow.
I still have a proviso...
If my fears are valid, if what I am scared of happening, happens - I am stopping chemotherapy, probably refusing radiotherapy and being cautious about the rest too...
It is MY decision, my family know why I am making it, I have openly discussed what this would mean, I have that right, no one can or will take it away from me.
I have been assured that my particular fears have been listened to and addressed and will not happen, I trust my team and believe 90% that they can ensure this, so I'm currently looking forward to getting back to work next summer holidays.
The point is, we all have our breaking points, we all have that line which we cannot accept or cross. We all need to know we can question why we are being recommended a treatment, especially when the side effects are so life changing!
Please don't feel that you need to hide how this is making you feel, by helping each other through this we help ourselves, we feel useful, we feel that even if I'll we can still help and this is as vital as those icky drugs they are soon about to pour into us!
Cold capping has been successful for so many ladies, I'd say you're probably far more likely nowadays to keep you hair than ever before. I am so sorry you have been put in a position that means you have to make that choice, but even Scorrier that you feel it's trivial, when it isn't, far from it.
The ladies in this thread seem to have already built a fantabulous rapport and will be delighted to help you and also happy to listen when you can help them. We are all gonna have some rough times, but they'll be do-able, share your fears, allow us all to help.
Big hugs, keep us posted!
And I'll post tomorrow to tell you how easy it was too!!! 😁 😘
It’s the thought of it that’s the hardest and worrying about the unknown. Most of us in this group had got ourselves worked up because you have so many worries about what is going to happen!
I hate drinking water and had to force myself to drink it the day before day of and day after.
I think you need to stop worrying about what other people think about your decisions, it’s your body you need to do what you need to do. There’s no wrong way to think or feel as everyone deals with it differently, my biggest frustration through this is that there are very few certainties no matter what path you go down
Hello. I was diagnosed with Triple Negative Breast Cancer back at the beginning of 2017. Yes, it is a scary time, but I'm a firm believer in that we have a choice & control over how we choose to deal with things. Unfortunately I now have secondary breast cancer & am on Capecitabine chemo tablets, but I'm continuing to be stubborn & not let this cancer drag me down mentally. Yes I do have my despairing moments, but I do bounce back from them & live with cancer in mostly I positive way xx
Chemo is definitely scary, I'm due to start on Thursday and I'm getting nervous.
I understand your worries you are only young and you are the only one who can ultimately decide.
My situation is similar in that I've had my lump removed with clear margins and lymph nodes although mine is triple negative so no herceptin for me. Despite this positive outcome from surgery we need to bear in mind that there is no way of knowing if there are any miniscule cells floating around in our bloodstream or already settling down elsewhere so chemo, as far as I can see, is really the only way to try to make sure that we see this off in one fell swoop and don't find ourselves back here in another year or two having to go through all the tests and worry and treatment again.
I worry about how will they know the chemo works on the stray cells when my tumour is already out, but I think, unfortunately,the nature of this beast is that nothing is definite anymore.
We just need to do everything we can to survive it all. Hair loss is a major concern for us but I'm trying the cold cap too, and if it doesn't work, well I'm focusing on the fact that the hair loss is temporary, it will grow back and although the next few months ahead might be rubbish, if it works it'll be worth it and 5 years from now all this will be a distant memory.
As far as water consumption goes, when I was doing the Joe Wicks plan earlier this year (back when my only worry was wobbly thighs 🙄) I had to drink 2.5l water a day. I found the best way was filling one of those bottles with the hours marked on it and gulping down my hours volume in one. I added a splash of diluting juice of those cold tea infusion bags which were quite nice. I'm going to start doing it again this week in preparation for Thursday.
Speak to someone at your local cancer support charity about anxiety management and please remember there won't be a single woman on this whole forum who isn't anxious in some way about what they're going through.xxx
Thanks so much. Just from a brief look at that trial I don't think I'm eligible as I'm her2+ among other things.
If I'm looking at my situation from an outside perspective then of course it's obvious, I should take the chemo, it's more than likely that there are still rogue cells flying around because they're not all going to get removed in a lumpectomy. But that's where I thought radiotherapy comes in, I don't really understand the need for chemo. Maybe I'm being ridiculously naive. It is just horrible because I feel healthy, I dont feel like someone who needs chemo, I'm fine, why would I allow someone to purposefully make me feel ill when I feel OK and dont have cancer? I keep meaning to call the breast care now line but I have no idea what to say other than probably cry down the phone and act like a petulant 5 year old saying it isn't fair I don't want this. Nobody wants this, I'm not special, in fact I'm lucky because right now this isn't a life threatening cancer but if I keep resisting then one day it might be. I just can't wrap my head around allowing myself to commit to what I can only see as torture on the chance it will avoid recurrence. I know I sound pathetic but every single part of my brain is saying this is the wrong thing for me to do. I have 3 really really young daughters and how dare I risk my life and have them lose me because I'm scared of being ill and mostly losing my hair?? Arghhh I really really bloody hate all of this!
HI Vaneysha and welcome .
You are really young and I totally understand how you're feeling. It's your body and your choice.
Sounds like you're on a similar chemo regime to me, although I haven't started yet. I don't know if it's worth mentioning, but the oncologist offered me a trail called the Optima Trial which tries to assess more thoroughly if chemo would be of more benefit to radio (if you're having radio). However, it may give you the same outcome or suggest chemo as a placebo and you'd never know. It's a trail - they don't know if 5 years down the line they'll change their minds, but it may give you some peace of mind?
Re the chemo, the way I understand it is that post surgery, although they've got all the cancer out, there may be rogue cells floating around your body that could become new tumours. What they can't tell you is which treatment is the most effective for blasting them away, but what they do know about chemo is that it attacks any growing cells (including the good ones, which is what makes your hair fall out and makes you feel crap). The bad cells die, the good cells regenerate. It is totally your choice. See how you feel. Maybe get a calendar so you can count them down and give yourself a treat every time you have a session.
Have you got plenty of people around you to support you? I've called the Breast Cancer Now support line before to let off some steam. Remember you are not alone.
Stay strong and positive. x
Positivity is what I need!!! Thank you for the welcome.
I'm not so good at drinking enough water and I know I'll need to but I really struggle with that and eating enough. It's going to turn into a self fulfilling prophecy that I'll end up ill from the chemo because of that and because I expect to feel rubbish so I will feel rubbish.
I think a lot of my worry comes from not really understanding the need for the chemo other than to have herceptin. I'm sure they've explained it to me countless times but I zone out and come away thinking I'm being stupid for resisting treatment and I should just suck it up.
Thanks for cold cap tips. I got a paxman kit which came with a headband and stuff, so I think I'm covered. I'm just pessimistic because I've had lots of "things that are highly unlikely to happen" happen recently and when I'm told the scalp cap is "likely to work" I immediately distrust them because I've been let down so much with various stuff since diagnosis.
I'm really not sure if I'll actually end up getting the chemo on Wednesday in my current state as I'm still too anxious about it all but I expect the first one is the hardest one right? Has anybody else here gone straight to paclitaxel?
Welcome to the group Vaneysha, as DJ said we are a positive group and I hope that helps you in this **bleep**ty journey!
theres no such thing as an unpopular post, everyone deals with things differently and has different thoughts and feelings about chemo.
i too am so scared of losing my hair and praying that the cold cap works
i had the cold cap for my first session a couple of weeks ago and so far so good. Take a headband to put over your forehead it really seems to help and drink plenary of water between now and Wednesday.
I'm over from the November board as I was due to start last month but after a few setbacks (mainly anxiety) I am now due to start on Wednesday.
I'm stage 2 grade 3 idc her2+. Had surgery and lump removed with clear margins and clear lymphs. I've been resistant to chemo since day 1, and have caused a lot of headaches for all the oncology lot by being so terrified of it. My chemo regime was meant to be 4x EC then 12x paclitaxel, followed by a year of herceptin. They've now done away with the EC and said OK just the 12 weekly paclitaxel then herceptin. For me it's all about the hair! I'm 33. I like my hair. Especially given i don't have cancer any more it seems hugely unfair to lose my hair over what seems like a sledgehammer to crack a nut. The team then said I should "try" chemo at 1 or 2 sessions and then if I can't handle it I can still go on with the herceptin. Well, now they put that in my head, there's no way I'll commit to 12 weeks of something I never felt I needed in the first place! I accept the herceptin but no proof it will work without "some" chemo.
Therefore I am VERY VERY VERY reluctantly agreeing to one session on Wednesday, with the cold cap, and then potentially one more for luck the week after.
I know this won't be a popular post and I sound ridiculous and stupid but I am a complete state over all of this and there's no way I could willingly put myself through what sounds like absolute crap for so long. It's upsetting that even one session of paclitaxel could still result in hair loss even with the cold cap so I'm petrified.
Sorry for such a long post!
My life insurance doesn't include critical illness, just terminal and I sincerely hope to be avoiding that! So no mortgage pay out for me ☹️ typical! The holidays I had running through my head while looking the paperwork out were gonna be fantastic 😂
Aurore2000 - sounds similar.
I might try to learn a foreign language!!
ostrich_kat that’s reassuring Re the injections and I have plenty of tummy folds!
I’m going to check my life insurance now.... xx
The injections aren’t as bad as they sound a small needle in to your tummy fat. It took me a few minutes to do the first one but it wasn’t too bad. I think it depends on your chemo as to how many and when.
with regards to life insurance, if you have a mortgage check, I’m pretty sure my mortgage company pushed me to get it and that’s how I’m covered X
i am in the same boat as you, my employer covers 5 months full salary and then 5 months half salary. My work is quite fast pace, I can work from home on some days but unrealistic to be a 5 days working arrangement especially if I need to chair some meetings and I think it’s not fair for people to pick up the more complex cases if I am not in the office to lead on them. Besides big open plan, people working with children and coming back with germs and bugs. 45 min commute in busy public transports - it hurts me to think I will have to put work on hold but I guess the focus needs to be on myself and going through this.
And I have not yet started chemo so don’t even know how I will react to it.
I am dreading spending time on my own at home tbh but will need to get a hobby or read all these things I never had time to ....
I was meant to set up work Critical Illness before I was diagnosed but can't now. Luckily my work are amazing and will cover me for up to 6 months, although it's not ideal....
I can work from home (have an hour's commute too) and will do what I can, but I also need to be fair to the company and I'm seeing my colleagues next week and I'll give them the option. I know they find it hard if I dip in and out as work is project based and things can change dramatically from 1 week to the next. I think there are longer term things that aren't time critical that I can keep across.
I'm now worrying a little about injections - nobody told me about injections..... is that with certain chemos or general?
check your life insurance, we had critical illness cover on ours.
Didn’t realise til I checked into it xx
mine have all my medical information from my consultant now, just waiting to find out if my claim will be successful.. keeping my fingers crossed.. have read that the work invasive is what they are after, so I should be ok x
Carolyn yeah I’m doing the same, it’s my GP holding up the process but it’s been pretty straightforward. I need to call the docs Monday and chase them
Lady 34.. yes a hassle, but will keep u busy!
i’m currently chasing my critical illness claims, which is keeping me busy atm.
Any of u had any experience of this? Xx
Not a weird hobby but got to clear my place had a leak before diagnosed now got insurance repair program to wade through. Hassle but perhaps a useful distraction. Also keep to have my mind on other things.
im the same, being a nurse in theatres on chemo is a def no no. It’s driving me mad not being at work too, too
much time on my hands.
missing my work family too (although do get regular txts from them all)
I'd love to stay at work, even just a couple of days a week as I hate sitting about, plus I find it's when I'm home alone during the week that my mind starts overthinking and I start worrying.
But do to the nature of my job, I couldn't risk being in contact with sick people all day, dealing with infected leg ulcers and doing smears n swabs, giving kids live flu vaccines etc defo isn't ideal for someone on chemo so I've no choice but to be off.
Would be good to have one of those jobs that you can work from home.
Will just need to take up some sort of weird hobby...open to suggestions, lol.
I’m quite lucky work have been really good and said I can come and go as I need to because it has kept me sane throughout the last 2/3months.
im a regional manager usually but am going to be working from home doing work at my computer and Skyping in to meeting when I feel well.
I think it depends what you do as well, I work in day nurseries so I’d be silly to carry on as normal as there’s so many bugs etc going round but I need to do something to keep me distracted when I feel up to to it
you definitely need work to be flexible tho I worked Monday Tuesday then hit a wall about 4pm and was exhausted on Wednesday, had my picc line redressed and when I got home fell asleep!
Because the injections are to boost white blood cell production they stimulate the bone marrow so there is potential for joint ache. Hopefully you might not get this side effect, but I am expecting I will as I have hip and knee trouble on and off anyway. My solution to that is painkillers and heated wheat bags with crossed fingers.
im not going back to work til it’s all over and done with. Don’t think I could face it!! Taking time for myself to get fighting for again and put this nightmare behind me xx
I started my injections on day 3.. took before bed with Paracetamol and all ok there.
I’m also a nurse (in theatres) so didn’t really bother me too much.
have def lost my taste buds, which I’m gutted about.
Its nice that we’re all quite young on here.. Hopefully we’ll be able to chat and help each other out.. it’s nice to know there’s others going through the sane **bleep** as you, if that’s makes sense? Xx