Hi, thanks Livvy, Flopsy & Fairycake, it's definately the worst part for me especially as I know it will be my eyelashes and eyebrows next...I did get some Argan oil yesterday to try and make brushing it after washing it easier next time. I wonder why it goes all matted?
Having picc line fitted today before chemo this afternoon, feeling resigned to the fact I have at least a week of feeling rubbish coming up. At least I know how it is going to be though. Still really struggling with chemo brain...is anyone else the same? My memory seems to have upped and left!!
Have any of you been offered counselling? Or perhaps you're better at communicating with your family and friends than i am.
Hi all, the hair going is just about the worst thing isn't it! Something else for me to expect, probably next week from what most of you have said. Perhaps doing the cold cap keeps it going for a week or so longer, Angwyd. The throbbing pains lasted most of the day and by 6 pm I was crying out with sharp pains towards the bottom of my back and down through my thighs. Very strange, not like any thing else I've experienced before, certainly not muscular. But - they have now disappeared completely!
On another note, my GP referred me to a local place which has offered me counselling, so I had my first counselling session today. It was very helpful, actually, although I felt a bit of a fraud because I guess I'm coping fairly well. It was great to be able to talk about how i feel without worrying too much about the person listening and trying to protect them. Have
Just wanted to let you know that something similar happened to my hair. I was also FEC-T and used the cold cap.
My long fine hair became so matted on FEC that I had to cut some of the knots out. I had lost all the oils from my scalp (and the rest of the body). Tried massaging oil into my scalp but made no difference.
Ended up losing most of my hair in the end (but enough around the sides to be able to put it up and hide the bald patches) but it began to grow again on T.
I've still got my hair in a silk nightcap in a drawer.
Not surprised you cried. I certainly did.
fairycake yes I definately had the odd day around the middle of this first cycle when I felt OK and then of course we go and overdo it.... And go back down again!
Sadly....I did cold cap and have 2nd FEC-T tmrw, washed my hair this morning and conditioned as usual...the result was akin to a birds nest, took 10 mins to brush it through and have loads coming out. Cried all morning, for some reason I feel the need to save the hair, am hoping this will pass as I accept this is happening 😨 It's a bit weird having a pile of matted hair on my dresser!
I would swear my partner has been reading this thread as he has bucked up beyond belief in the last couple of days....maybe a temporary show of support...we will see!
Love to all
Day 3 of round two - up early for hospital appointment 48 miles away so had breakfast really early along with prescribed meds. Felt a bit green and burpy in the car - but thankfully no more than that.
Yesterday felt fatigued with achey arms and legs but the concensus from many threads on these boards is to do some of exercise or walk. So took some paracetemol and went christmas shopping with my daughter for 3 hours but had the obligatory coffee break with cake half way through lol!! Last night I was up with the owls for three hours - that would be the steroids - be glad when they are done and I can sleep relatively normally.
Hope everyone is coping and using whatever mechanisms work for them. The first afternoon and evening after chemo - I threw everything that I had been given for anti-sickness -and it seemed to do the trick but those melt on the tongue ones taste revolting!!
I had a great day yesterday, the sun was shining and I spent the hours gardening and enjoying the light. Today I feel very odd - wobbly, weak, shaky, aargh! I had concluded from yesterday's good day that I would be fine until next chemo, clearly over optimistic! Do others have this? Rather than feeling terrible then gradually getting better until next chemo, ups and downs throughout the cycle?
Good morning everyone,
had my pre Chemo 2 checkup with my Oncologist yesterday - everything was fine and I was deemed 'fit' to have the next round on Tuesday. They have changed my antiemetic because I am still a bit nauseous on day 17. My body hair has decided to shed, but my head hair(touch wood) is holding on - I did cold cap, and will do so again on Tuesday. Was told this morning that I looked tired and had lost some weight....well, I am fighting a battle at the moment so am bound to look tired, as to the weight - it must be because I can't drink a glass of wine without it giving me heart burn! I like my food too much for it to be anything else, so I know I couldn't Fast - but if it works for you and you know you can do it - why not. I have been for a reiki session, and though very sceptical - did find the whole experience very relaxing and have booked another session.
we have to keep positive especially about our appearance - we are all beautiful. This disease is a temporary blip in our lives and we will get through it.
Stay strong everyone.
I had a heart scan and it was all done very discretely. Had on a hospital jacket that I had to open up and it only took about 10-15 mins. I’m pleased to say that they found one!!
Not had any issues down below, but I’m only one Day 3 of my first cycle. Contact your nurse for advice and get it sorted – no need to suffer!
Good luck for yours!
Thanks Blueash. I know I can't do the fasting. I'm not even thinking about doing it for the side effects. I am pre-programmed to get the nausea. I get motion sickness and suffered virtually every single day of my pregnancies. At the moment, it's the only side effect I'm getting, although my limbs are starting to ache a little bit - probably due to the injections.
I'm concerned more about making the chemo work as well as it can. From what I've read, getting into ketosis due to low carbing is as good as fasting.
I'll have to give it a go. Perhaps start on Friday with the hope that I'm low enough on Wednesday. It's quite hard as I'm hungry all the time even though I feel sick and have heartburn.
Intermittent fasting might be a way for me going forward after the treatment ends though.
I have done intermittent fasting for years so I have no idea how you would get on if you have never done it before BUT read everything you can get hold of by Valter Longo.
I fasted for 60 hours before and 20 plus after. Cannot be more precised because my appointment time varied but my treatment was usually on Friday morning earliest was 9 latest 12. My last meal was Tuesday at about 7 pm and I would not eat again until Saturday at about 8 am. I had nothing but water or black tea/coffee.
My side effects were better than most other peoples in that I was never sick, never had the runs, I did not get mouth ulcers or cold sores or oral thrush. I did still get the fatigue, my blood counts still went low, I got the metal taste in the mouth and it did not stop my eyes watering or neuropathy.
This is my "good week" before second dose of EC on Monday and I was doing quite well until last night, crashed out at 7.30 feeling sick and with a headache, not much better this morning not sure it's related to chemo or just not well so have been checking my temp before taking paracetamol and it's been around 37.3 for most of the time, I have an appointment for thyroid scan (hope its clear) and bloods tomorrow so will mention it if no better.
Yesterday I went to my local Post Office to send a parcel back to Nicola Jane the mastectomy bra company, the lady behind the counter asked if I had been there and we got into conversation, it turns out she had BC 4 years ago, she had reconstruction using implants but these were damaged by the Radiotherapy, so 4 months ago she had the Diep Flap done (I am leaning towards this), she is so pleased with it and has offered to see me when my treatment is over to talk to me about it and even show me the results, I was so amazed at her kindness, I had a bit of a cry when I left.
I am being very gentle with my hair at the moment I had it cut short before chemo, but tugged it the other day out of curiosity and and yes it came out, fully understand how you are all feeling re boobs and hair I feel the same, it is unfair on top of everything else but as Blueash said only temporary and we will get through this.
When I was diagnosed I pleaded with my sisters to get checked as neither had ever had a mammogram, my little sister (she's 55) had hers on the 25/10 and has just recieved a call back appointment for this Monday, they want to do more xrays and a scan, hopefully as she has quite large boobys they are just being exter vigilant, fingers crossed.
Hugs and Best Wishes to you all
Yes, the problem you describe can happen. It is because our mucus membrane is affected by the chemo.
This is the explanation from Wikipedia - for better understanding - A mucous membrane or mucosa is a membrane that lines various cavities in the body and surrounds internal organs. It consists of one or more layers of epithelial cells overlying a layer of loose connective tissue. It is of ectodermal origin and is continuous with the skin at various body openings such as the eyes, ears, nose and mouth, the urethral opening and the anus. Some mucous membranes secrete mucus, a thick protective fluid. The function of the membrane is to stop pathogens and dirt from entering the body and to prevent bodily tissues from becoming dehydrated.
It may be an idea to call your GP, tell him/her that you are on chemotherapy and what your symptoms are.
They should hopefully be able to help. Initially I tried Sudocream, which helped and I used wet wipes to ensure I was as clean as I could possibly be. HOwever with me the whole thing developed into mucositis and I was given antibiotics to take, when the symptoms occurred post chemo treatment - which I then took for one week only, until the next time. Towards my 5th and 6th treatment, i did not need the antibiotics anymore as everything had settled down.
Hope this helps.
Morning, ladies. Just checking in after a few days of feeling utterly miserable due to the constant nausea. I feel slightly better this morning, but need to do a few things and know that moving about will shake it all up again. On the bright side, there is no way I am putting weight on during chemo!
So happy you are feeling better, Fairycake.
Angie, such a tough thing to deal with. My initial thoughts were for you to get rid of him. There is nothing worse for dragging you down (no, not even all this) than a man who is wrong for you. However, these are tough times, and perhaps you need to get through the worst before dealing with it. Or perhaps you just need to give him permission to leave. Please don't worry no-one will want you afterwards as that is simply not true.
Blueash gives very wise advice about how unimportant what we look like really is. However, I think this is probably easier for those of us who are older and in happy, secure relationships to take on board. At the moment, I would be very, very happy for all my hair to fall out in an instant in exchange for the nausea to disappear. Yes, I know I'm going to have the hair loss AND the nausea at some stage, but you know what I mean.
Blueash, were you able to stick to the fasting all through your chemo? I low carbed for the first one, but I am surviving on carbs now due to the nausea, and I don't know if I'll be able to make the switch. NorrNormally, I eat very healthily, but that's gone to pot at the moment as many things smell or taste terrible. I'm worrying a bit about it as I have triple negative and I want to help the chemo to work as much as I can.
I too was in a relationship that wasn't working, and after a lot of soul searching will be moving out in a couple of weeks. Obviously it's a huge decision, because like you I think who's going to want me now and how will I cope on my own. But better that than being with a man who is not able to support me through the toughest times.
I know a lot of ladies are waiting for their lives to return to normal, but I'm going to use this time to change things for the better.
Good luck with whatever you decide x
So glad to hear you like that eyeliner - it has been a godsent to me, as I have very sensitive eyes - and it is waterproof. So it stayed really well all day.
You are right re eyelashes - I stocked up on some for when the time came, but never used them.
As the lashes fell out, initially a few where left. I was reluctant to put false lashes on, as when removing them - the few I had would likely be torn out. So I started using the liner. It also requires a special glue and glue remover, so they do not become loose due to sweat and moisture. Also - it is very difficult placing them, so they look natural, as you won't really know where your lash line is.
When you are bare of lashes and apply the eye liner to the top lid, it is a good idea to also dot a line onto the'water line' so you so not have a skin coloured line towards your eye.
As to brows - I bought an eyebow wig, lol - but again - never used it, as I became quite handy with the eyebrow pencil. The usual stencis did not work for me - they were far to big!
The false eyelashes I would leave alone - my eyes were always watering and if you are not used to them now would not be a good time to try them.
Instead use a pencil to apply eyeliner top and bottom to give you some definition. Ditto for your eyebrows.
I had my eyebrows tattooed on as soon as I knew I was having chemo. Sue recommended the brand Urban Decay and it is very good, I got a travel size one from ebay in dark brown.
I cold capped and my hair thinned but I still have lots so I don't need my wigs but I have got a couple of "toppers" just wide extentions but you need some hair for them to attach to.
Just stopping the chemo has made a huge difference to the way I feel - remember I started in August and mine is behind me now.
Angie, you need to take care of you and if this relationship is going downhill be strong and say goodbye.
I had a breast lump scare when I was in my 20s which turn out to be nothing. I can recall that when I was that age what I looked like was very high on my priorities. I thought my husband would go off me and that I would be disfigured and ugly. As I say it turned out to be nothing just a blocked milk duct (I had been breastfeeding my last baby).
This time round and I am much older and I hope wiser and my thoughts and feelings are entirely different. I thought if he goes off me I am better off without him - and I meant it. He did not have any such thoughts and has been wonderful throughout this ordeal.
Your body is just a shell to house the "you" inside. Perhaps we are all on this journey to bring that thought home to us. As you go through life your priorities do change - when you have small children they are your entire focus and they should be. When they grow up you have to find a new focus or go mad with "empty nest syndrome". This breast cancer is a huge challenge for all of us and it will force us to re-focus areas of our lives. We may not want to but we are not being given any choices - so if you feel disfigured and ugly you can acknowledge that. Then realise that it is temporary, and that it will pass. You will get better, your surgeons will sort you out physically, the mental and emotional areas might be harder but please know that you are not alone and we are all going through it. Some of us cope better than others xxx
Thank you everyone for your kind words. I don't know what I would do without this forum.
Fairycake im so sorry you are feeling the same, I can't help but feel he just won't walk away cos he knows how bad it will look on him. I've tried so many times to make the break myself so he doesn't have to feel guilty.
on another note, has anyone tried any false eyelashes that they can recommend? I've never been able to do them before but I know I will want to use them for going out once mine go.
Keep taking as much pride in your appearance
as you can. I had my mastectomy and node clearance before chemo and I can tell you this is doable! I had my final prosthesis fitted yesterday and externally I look completely normal.
Even in my underwear it is difficult to tell anything is different. My surgeon left a neat and low scar and I'm looking forward to wearing a new swimsuit on holiday next year ( we have the best excuse for new clothes!).
Relationship wise, I have a friend whose partner left her during chemo 13 years ago because he could not cope with the strain on an already rocky relationship. It was the best thing that ever happened to her. She subsequently met a man who accepted her completely for who she is and they have a fantastic time living life to the full.
Keep going - we are all here to support you ❤️
Hi Fairycake2 , thanks yes, try to keep upbeat although easier said than done some days as everyone going through this knows. I know what you mean about not feeling feminine or even sexy and I have even caught myself looking in the mirror and staring hard but not really recognising the face staring back which is a bit scary. Then I snap out of it, give myself a talking to and look for a positive. Today that positive is the fact that it's such a beautiful autumn day and I shall get myself out for a little pootle round the garden.
Hope everyone else has the best day they can, love and hugs Kaz xx
hi Angwyd, it's really tough isn't it. I don't know what i can say to help cos I feel the same way . maybe not to worry about the relationship or make any decisions now while you are so vulnerable? The most important thing at the moment is to concentrate on keeping well physically, after this is over there will be other issues to tackle. Keeping one's sense of identity and self pride has got to be the priority right now. Like you say, you will pop back up, you can't keep a good woman down!
i know exactly how you feel, I had a lumpectomy which revealed a much larger tumour than they thought.now I'm having 6 months chemo then mastectomy and I'm in tears all the time at the thought of it. Bald and with only one breast. As I am having radiotherapy after the mastectomy so they won't do the reconstruction for at least 6 months after which means I have to go through next summer with one breast. I've always taken pride in my appearance so it's hitting me hard. I know everyone one says they don't define us by how we look but it's how WE feel about how we look that's so hard to overcome.
im in a relationship which isn't working and im scared to end it cos I think who will want me now...? It's killed my self confidence.
we are strong and yes we do have to battle on with this but I feel,like I've lost myself and it's only going to get worse.
Just having a low moment but I will pop back up!!
Well done Kaz, still sounding upbeat! I am really dreading the loss
of my hair, which will start in about a week. It really won't suit me at all, so it's the wig for me. One's femininity is attacked by this disease in such a cruel way: first a breast has gone, then the hair, which is even worse. It's hard to imagine feeling attractive or sexy although I suppose it is early days, perhaps when this is all over, that will come back. I'm sure we all feel like this in bad moments, w we just have to put those feelings on the back burner while this is going on.
On a positive note, the nausea is subsiding so I feel better, like i might manage to do more than droop from one room to another for the entire day!
Had chemo number 2 this morning and now the nausea is beginning to creep in. This is despite anti-emetics being added to my infusions this morning. Just taken a metoclopramide - so we'll see how things go! Definitely not cooking dinner tonight lol!!
The hair is hanging on and I cold capped again today -but there is some shedding - but more from eyelashes and elsewhere!!
Good morning lovely ladies. Just been catching up on all your experiences, all so familiar! Day 5 post EC chemo cycle2 and not feeling too bad. This time I just feel much more lethargic although thankfully the nausea has so far not been so bad and I've not needed any tablets other than the ones I came home for first 2 days. I've found nibbling on corn/rice snacks and strangely enough celery,carrot and houmous has helped along with the hot ginger cordial. My hair finally got the better of me about 10 days ago, couldn't stand the handfuls coming out everywhere, it had to go. I asked my lovely hubby to do the honours, bless him, not easy for him either. However out came the scissors and razor and there I was 10 mins later sporting a very fetching style! I actually didn't get upset and hubby was very complimentary , it was in fact strangely liberating. I have worn my wig a few times out and about and no one has batted an eyelid. And if they do it's their problem not mine ! One thing though it does make your head warm so I suppose the fact the weathers getting colder is a bonus. Well here's to each day getting a bit better , My best wishes to all those with treatments coming up , be strong and remember this is just a moment in time we are having to go through, focus on the end game. Love and hugs Xxx
my my hair started falling out on Day 14 of cycle 1. It was more or less gone by Day 18. I too had a headache for 3 days and a weird feeling like the one you get if you brush your hair the wrong way. Once it was nearly gone I got my hairdresser to shave my head as I really needed to wear my wig and it doesn't fit as well over bits of hair! They were really helpful and made sure not to use the closest setting so as to avoid any scalp injury. Once it was shaved I felt strangely liberated! No more hair all over the house and just another milestone faced down.
Weirdly, at Day 15 of cycle 2 my other hair is hanging in there.....in fact I had to ask the chemo nurse if it was safe to pluck my eyebrows, which were threatening to join in the middle! Did that today but did notice that it didn't hurt at all, so maybe those follicles are dead too....
I'm used to the wig now. It is similar to my own hair and I haven't seen anyone do a double take when out and about. It helps me feel normal and I wear it as much as possible.
It it is a pain but at least our hair will grow again! The loss is only transient and a small price to pay for the best outcome from our cancers!
Rock those wigs!,
Hugs Sue x
yes I felt the same as you, very nervous about wearing a wig outside the house so I took the bull by the horns and wore it out of the hairdressers straight from fitting, see my pic further down this thread! That said I'm feeling a little anxious about having to fit it on myself as well as the hairdresser did. Haven't worn it since but at least I know it can look good when the time comes. I cold capped and haven't had any loss yet and it's day 18. I saw the chemo nurse yesterday and said to her I haven't lost any body hair or eyebrows etc, she said it will happen and more than likely in the next week. So I won't know if the cold cap has worked until I start to lose hair elsewhere.
Im due for next chemo this Friday and I also asked if the effects will be the same as the first one do does it have a cumulative effect the more you have. She advised that yes it does get worse the more you have....not what I wanted to hear! Preparing myself for another awful week next week...
Love to all
I started right at the end of September, so on Day 14 of cycle 2 today. Just to let you know that although the pattern of what SE cropped up when was almost identical to the first cycle, the intensity did vary quite a lot, so you may not feel so bad this time.
Where I go the steroids and ondansetron are infused on cycle 1 but given as tablets when you arrive for cycle 2. If it's the same where you go, remember to eat within 1-2 hours prior to your chemo appointment to protect your stomach from the steroids.
Hope it goes well this time. X
Sorry to see some of you are really suffering, I too thought the constant burping was normal but will mention it to the nurse when I have my next chemo.
I drove my new car today for the first time on my own, not normally such a big deal but my old car was written off two weeks before my surgery and hubby has been doing all the driving since, only went to the opticians but to was so nice to just do it, will stick to local driving for now though.
Spent some time yesterday practicing tying scarves and other things as hair is definately coming out now, was nice to be doing something about it, I have a place booked on one of the Look Good pamper sessions at the end of November, quite looking forward to it.
Picc line flush today, hope it goes better than the last one.
Hope your all feeling better soon, love and hugs
So sorry Gracie, I think we're both feeling pretty s*** this morning. Thank you for posting replies, people, they do really help.
I am burping and nauseous before taking metoclopramide! I thought I'd take that to make me feel better!
Oh God, I feel so sick this morning. I'm not too bad until I move around, and then it seems to shake it all up. I have just had a shower and now I feel awful. So sorry others are going through this too. I have 7 more lots of chemo to get through. The thought, at the moment, is truly terrifying.
Sorry for being such a wimp this morning.
Nausea was the biggest thing for me too - managed to get my antiemetic meds changed, and the burping and turbulent tummy eased too.
hope you feel better soon