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January 2019 chemo starters

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Re: January 2019 chemo starters

We will have to keep in touch 😄 there doesn’t seem to be many tripe neg like us x
G
Member

Re: January 2019 chemo starters

Hey Georgie, just wanted to say welcome and I hope Monday goes okay honey xx
Member

Re: January 2019 chemo starters

Hi all

 

I'm late to the January party but starting FEC-T this Monday.  A bit like cramming for an exam and just really starting to delve in deeper to the SE and remedies etc! And getting the hang of the forum. 

 

I have triple negative and over 2 ops I've had a mastectomy and axillary clearance. 4 weeks since mastectomy and feeling ready for this next stage to start. 

 

Going to browse through more now to see if there's anything I missed! 

Look forward to meeting you all. X

 

Member

Re: January 2019 chemo starters

Hello Helen

 

I'm due a picc line. They couldn't fit it before chemo number 2 (next Tuesday for me) at my hospital and wanted me to come into the hospital during my week 2 of my second EC to have it fitted and I refused as that's the week my wbc drops and I would have felt really anxious having it fitted then so I'm having mine done in week 3 of my cycle before my third EC. I imagine it's harder to bring an appointment forward, rather than put it back, so in your position I would ask for it to be done the week before your next (3rd) chemo. RE: hair, there are lots of things you can do like using oils for your scalp and shampoos that boost hair growth, even minoxidil was mentioned by a lady on here who was cold capping and kept her hair. I posted some suggestions lower down this thread and all are topical, with the exception of biotin supplements of which you should be able to ate 900 iu per day safely. Obviously run by your onc at next appointment. For anyone with sensitive scalps, chillow pillows are great. Can be bought on Ebay/Amazon for under a tenner and keep your head cool at night, just slip in between your pillow and pillow case. 

G
Member

Re: January 2019 chemo starters

Hi LB it isn’t heavy the hospital one, it is a simple light foam but something about it didn’t feel right and it didn’t really mould to me, all in all I stopped wearing it day to day. I had a quick nosey in John Lewis who had nothing and m&s who had basically the same as the hospital one just with a nipple and that too didn’t feel right.
I know some people plan to stay flat however I do intend to have an implant when all this is over so I just accepted not wearing one for now. I know u can get ones made for u etc which I imagine are good but they are expensive, so thought I would see further down the line whether this is something to invest in or not but hoping I won’t have to wait too long after chemo to get recon rolling as long as rads not required.
Then I stumbled upon this wonderful charity which was a game changer. Alas I have a neutral colour (cream!) I can’t believe I was so boring but I must own up to requesting it, don’t know why, you think after everything we are going through, making a brave colour choice for your knocker would be nothing 🤣 it does have lilac stitching though which is a smiley touch!
Anyway here’s to our knitted knockers 🥂(if only it wasn’t day 1 after chemo this could have been a real clink of the glass!) 😘
LB
Member

Re: January 2019 chemo starters

Hi G that's great to hear.  Is the one they gave you at the hospital very heavy - I've heard that they are so that's why I thought I'd get prepared.  What colour is yours? Mine's a lovely torquoise on the front and lilac mix on the back.  I love it.

Hugs x

G
Member

Re: January 2019 chemo starters

Hi LB I ordered mine too and came last week, never thought to post this, good call! Much more comfy than the one I was given at the hospital which for some reason made me ache.
X
LB
Member

Re: January 2019 chemo starters

Have any of you ladies who have had, or like me going to have a mastectomy, heard of knittedknockersuk. They are a charity and volunteers knit a knocker to your size that fits into a bra. I ordered mine when I was told that my treatment plan was to have chemo and then surgery. It arrived today and is absolutely brilliant.
G
Member

Re: January 2019 chemo starters

I would second this. Either try getting it moved again (they can only say no) to before ur next session or definitely move the appointment to nearer the 3rd session on one of your better days, I had mine done 3 days before. Sounds like picc is just as straightforward and I imagine less obvious scarring as I have another wound (on my good chest side 🤬) that will scar although should fade over time I guess.
Either way you have got this, you just don’t always know until in the moment and something gets you through.
Massive hugs xxx
Member

Re: January 2019 chemo starters

Hi Helen,

Just wanted to reassure you about having the PICC line, I had one throughout my chemo and I had no problems at all. It didn't hurt having it inserted or when taken out. It said on my letter that relatives couldn't come in with you, but they let my daghter stay with me, so it might be worth checking. Do you think it might be worth phoning your onc on Monday to see if they could sort you being fitted in before Thursday as it doesn't seem at all fair that they're making you come in the day after you've had chemo. Or if you've already had chemo on Thursday via your vein, can it be dalayed until nearer your 3rd chemo when you're feeling better? I don't know if the procedure's the same in all hospitals, but I had to lie on a bed to have mine fitted which wouldn't be good for you if you're feeling sick.

I don't know if I've already mentioned this, but I wore the travel sickness bands whilst having chemo and for a few days afterwards, so they might be worth a try if you haven't done already xx

G
Member

Re: January 2019 chemo starters

Just realised your name autocorrected from Helen to Humble...or the chemo drugs did it, sorry Hun ☺️
Ask as many questions as you like, we all have/will! I would ask why Picc is being suggested over port when you go as my chemo nurse said she wouldn’t have anything else other than port if she needed chemo as it is the most straightforward and easiest for the patient once in (even showering etc) although I know many have piccs so it maybe just as straightforward etc

Big hug xx
Member

Re: January 2019 chemo starters

Thanks so much G and B74, hearing other people's experiences really helps.
I'll ask on Tuesday, when I go for bloods and to see the consultant, about something to help on Monday week for the picc. As it's an assessment is Friday (Mum is taking me so I think I'm just going to take a bowl and towel and hope for the best, but dreading), I guess they might say a picc is no good, and that I need something else. Again, guess I just have to wait and see wgat happens, and then take what they recommend and work with that - I may be back on here being a nuiscance with nore questions!!
And the hair thing, it's shedding but only in the last 48 hours, so I guess I need to reconcile with that, and wait and see how long I can tolerate it for. I figure you know when you're ready, either because of the amount of shedding, or the discomfort (or both 🙈). Thankfully, the shedding's light and, unlike some areas of my body, I'm sensation-free at the moment. I suppose one or both of those will force me to make my mind up in due course.

I'm so pleased I've found you all - Superwomen in droves - to help me through this. It makes such a lonely journey thst bit easier. Thank you all so much 💞
G
Member

Re: January 2019 chemo starters

Hi Humblebumblebee, I have had a port which is different to a picc or Cath (which I think go in your arm but I didn’t really look into those too much). It goes in my chest but all under the skin so I can shower etc after the wound healed (more bio oil needed!) without covering it up. The left is a little more of a faff I believe as the tube thing needs to attach to the same thing it would if it had been on the right so takes a bit more pushing etc which was uncomfortable but it did its job today. They use a special needle that goes into the port under your skin.
I really feel for you with your veins and having to go through 2 cycles, I just had the one and that was difficult enough without knowing what is coming for the second. If they are not able to change it then I would ring up and ask if there is a sedative you can take at home before you go so at least mentally you are relaxed even if the physical awfulness has to happen. This is what they suggested I could do until they decided the port. I realise not the answer but worth a shot maybe?
xx
B74
Member

Re: January 2019 chemo starters

Hi HelenBumblebee, sorry to hear about the delay with the PICC line, no not something I’d want to have to deal with the day after treatment either. Do you have anyone who could go with you and sit in the queue for you while you lie down in the car? (For example)
With hair - I ummed and ahhed for so many days - should I bite the bullet? Or is it premature and should I hold on as long as possible, despite shedding and discomfort? Finally I decided to do it night before AC2 just because I didn’t want to cope with buzzing/shaving when sick and tired. There’s a big emotional difference between short and buzzed, but it had to happen sometime, now it’s a relief.
Member

Re: January 2019 chemo starters

Meant to thank you for being so lovely too. I thought I was tough enough but I am finding it hard now, and the hug is massively appreciated.
Did you use the cold cap? I'm just starting to notice hair loss yesterday/today, but elswhere seems a lot quicker, so should I assume the cold cap's working? I don't know if I should just get on and shave it off, or if that's unnecessarily drastic when I've only just started to lose it. It isn't hanfuls by any means, just all across my hands when I ran my fingers through it. I've always had long hair, but thought I should get used to having less before Christmas, so I had it cut short. Did you lose that much in a week that you felt you had to do it, or did you just feel you didn't want to wait and see how badly you'd be affected, and just bite the bullet? I don't know whether to do it or sit it out and only worry about whether to do it when it starts to show?
If I've had stinging and prickling elsewhere, should I be expecting the same with the hair on my head?
Member

Re: January 2019 chemo starters

I had my workshop day 2 days before FEC1 and when they assessed my veins, they said straight away that I'd need a picc, but there was no way it could be arranged before my first treatment. I was told it would be a week, that I'd go in on a Friday for an assessment, and then back on the Monday to have it put in, so it was all ready for FEC 2. Like I said, FEC2 is Thursday, and my assessment's Friday, with a view to having it put in on the Monday after. My arm is so painful now, but when I called to ask if I could bring the procedure forward to ensure it was done ahead of FEC2 as I'd been told it would be, I was told if it could be done sooner, then I would have been offered sooner. I got all emotional and had to get off the phone, so Friday it is(and only for assessment), despite the fact I'll be less than 24hrs post treatment and barely able to sit up, let alone get to the hospital and wait in what I've been told is a very busy clinic with long delays. Happy days.

My right arm can't be used due to full axillary clearance, so it's left or nothing. Is yours a picc or a cath? Why is it harder on the left?
Member

Re: January 2019 chemo starters

Wantolive, yes, totally agree. I was shocked by how quickly I felt all fuzzy after FEC1 2 weeks ago. Coming home, I felt drowsey but, within an hour or so of being home, my head was swimming, and not in a fun way.
G
Member

Re: January 2019 chemo starters

Wow Kip I love both pictures. It’s funny how my bold head is now not bothering me after two days, feel quite free from the worry re will it/won’t it, quite tiring in itself!!! School run this morning was a bit strange as I had a scarf on which looked more obvious than the hat thing I wore yesterday, people did look, as we all would, but not in anyway wrong, more in a wow ok then. I feel like me and our youngest achieved a lot today! I am such a hair person too so quite surprised myself here so if not happened to you ladies then I really hope it doesn’t but if it does, you will manage it I truly promise 💗

Second chemo done today and the port ladies was such a game changer! If anyone having vein issues do ask, the procedure was horrible, not helped because it needed to be on the left due to my lymph nodes in the other arm being removed and it is a more difficult procedure on that side. I also felt really vunerable on the operating table as you aren’t sedated or anything and all I could do was think about stuff and the journey here and where it’s going and had an emotional moment (ok I tell a lie, possibly 75% of the procedure was teary!). They looked after me and my mind obviously needed to do it so hey ho 🤪.
Enjoy your whatever kind of evening is on the cards for you (crisp, non alcoholic ginger beer, nausea tablets...rock and roll!) xx
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Ah thanks ladies,  not sure if its smiley and fun or "drugged up to the eyeballs".. but I'll take the compliment.  you'll soon be posting your new mad hairdos...

xxx

 

Member

Re: January 2019 chemo starters

I agree Kip, you look great in both pictures, you have lovely eyes and a smiley sense of fun. 😍
Member

Re: January 2019 chemo starters

Helen
Sorry about you having a trouble with phlebitis. Big hugs. You are very strong lady though. I can totally understand about being emotional saying good bye to your hair. Nothing to say here. Just remember this all will be over soon and we all will have our lives back. X
Member

Re: January 2019 chemo starters

Hi Kip
Your hair look amazing!! Honestly and you look so healthy!!!!!! Iam constantly covering my hair if not wig it's a scarf when I am home. So nobody see me without hair. ((
Kip Community Champion
Community Champion

Re: January 2019 chemo starters

 

 

hi January Chemo Campers!   I've just been reading through your latest posts (hope you don't mind) and it really brought tears to my eyes as you all deal with the hair loss.  I was transported straight back to that day when I braved the shave.  The head pain when its shedding, the prickleness when laying on your pillow (that goes once all the hair has), the worry and fear for your children.. bless you all... I remember it so well (and it was only a few months back).   Had to smile at the stories of hair disappearing "elsewhere".. I remember that too... mine fell out in my knickers virtually all at once... what a fright!   In terms of using something to encourage hair back... I use the Lush hair shampoo bar called "new"... its a little red circle thing.  I began using it when the first hairs starting showing and (also rubbed it into where my eyebrows once were).  I think I said before my hair began growing during the last 2 x T chemos, 4 months since the end of my chemo and I am having a little trim next week to remove the startings of a lovely mullet!  If I can I'll upload some photos. 
hang in there girls... you are doing wonderfully...this will make you smile.. the first place i remember seeing new hair growth was my toes....Bloody Cancer!!!

Kip.. heres my before and afters (and the after one was a month or so ago!)..  Excuse the eye bags.. just another joy of BCGrey hair.JPG

P1030002.JPG

Member

Re: January 2019 chemo starters

Hi Helenbumblee,
You poor thing, it sounds like you are having a tough time. I’m sorry to hear about your phlebitis and your hair loss. Can you really put your foot down and insist you have an appointment for a picc line before your next FEC? Surely you would be considered a priority.
I know the hair loss sucks, mine was two weeks and it started pricking etc. I had it shaved exactly three weeks to the day. It’s all traumatic stuff especially when you have children to worry about. Lorraine.1 put some really helpful info about trying to encourage hair growth further down this thread.
I have had 2 FEC’s now and would say my symptoms are similar to yours. My sense of smell has really heightened and I find this difficult, also a dodgy stomach.
Just wanted to send you a hug and I hope your phlebitis improves. Breast cancer just sucks.
Sunnydazexx
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Re: January 2019 chemo starters

Hi Helen
I just press Add Comment at the end of someone else's comment. If it makes sense. I don't don't much about using this site too. Lol
Just finished my EC. It goes straight to your head. Strange feeling of fuzziness...
Member

Re: January 2019 chemo starters

Looks ok so assuming I've done the right thing.

So, after the first week, I seemed to ping back into 'me' again, which was a huge relief. Tired at times and headaches, but nothing severe, so I'm trying to get as much done as I can before FEC number 2 on Thursday.
My appetite seems to have returned in terms of what I enjoy, although I don't feel especially hungry. Some smells really affect me still, although I'm so much better now and gaggibg left, right and centre appears to have ceased for now.
48 hours ago - so literally 2 weeks post - the hair situation has arrived. Feeling stingy in patches and didn't really realise what it was until I saw hair going down the plughole. It's washing off my arms and legs slowly, and almost gone from more intimate areas. I can deal with that fine, but seeing eyelashes and eyebrow hairs on my dinner plate was nasty and it's starting to fall from my head now, which is still a horrible reality, despite expecting it.
I used a cold cap, so I'm waiting to see if what's on my head will thin or disappear. My 4 year old keeps curling in to me and saying he won't recognise me once my hair's gone, that I'll look strange/not like me/not pretty anymore. My 7 year old is a worrier and my fear was concerned yeaterday when the GP diagnosed him with alopecia.

I have phlebitis from my surgery in November and, as I feared, I've now got it in second patch on the same arm, from treatment 1, which is painful. The nurse was lovely and said I needed a picc line before treatment 2, although the hospital couldn't offer me an appointment until Friday next week, so I've got another treatment to get through still before I can have it, and am braced for more discomfort. Not only that but, being the day after treatment, I'm going to struggle just getting there!
Member

Re: January 2019 chemo starters

If I've done the wrong thing in trying to add an update, will someone explain how this new layout works? All I could see was 'Reply' in the bottom of each message, and I'm not replying, I just want to add a comment to the mix. Finding this layout confusing!
B74
Member

Re: January 2019 chemo starters

Well AC#2 was uneventful, the nurses are all so nice which really helps a lot. This time I was nervous but not terrified like the first time around, just knowing what's to come made it easier somehow. The good news was that my blood counts including neutrophils were "all excellent, better than before you started"!!! Not so happy about having to have a neulasta injection tomorrow, but I definitely don't want another trip to hospital.

 

Now I'm home waiting for side effects to kick in.... oh joy. Do the rest of you come home and rest, or just do normal stuff until you can't any more?

 

Oh and I didn't manage to shave last night - I got my husband to cut as close to the scalp as he could with scissors (we both shed a few tears!), then got into the shower with the intention of shaving the rest, but I couldn't see what I was doing, the razor was getting clogged up etc etc so I gave up and went to bed. So my current new look is very mangy and motheaten with obvious scissor marks all over my head. More concentration camp than proper bald. I still get a shock every time I see myself in the mirror. The kids have been ok, lots of extra hugs from my 7yo (as if to reassure herself I'm still the same mum underneath), but not entirely comfortable yet.

 

Hugs everyone & good luck G, MMJJ, Wantolive & anyone else also having treatment today.

Member

Re: January 2019 chemo starters

sunnydaze, yes good carrier oils would be coconut, castor and for those with tender scalps almond oil is a very soothing carrier. You'll find biotin (b vitamin) is also used in many shampoos that promote hair growth and if you take up to the EVA you won't do yourself any harm - however do run this by your onc so they know. I checked I could do all of this first.

 

I don't know if any of you are near a Haven centre, if so there might be a herbalist there who can supply you with an oil for your scalps. I know there is one at the Haven in Fulham, London. 

 

I know G, i am a bit obsessed I think (!)  probably because I lost so much hair before. I was devastated. At the moment I still have mine but aware that could change tomorrow as this is my first time having chemo so unsure how it will affect me and when. 

 

Wantolive, I hope you get some rest before tomorrow. Will be thinking of you all xxx

 

Member

Re: January 2019 chemo starters

Hi girls just quick update before I TRY to sleep tonight before my chemo. Good idea about bio oil. I am gonna get one I used it for my stretch marks while was pregnant and looks like good idea to start using it on my head as the remain 2 hairs on my head hurting me. Or it is my scalp. Dry skin and fact that I use wig all day and then my scarf. Don't know. Big hugs to those of you (all of us) who feeling emotional about losing hair or shaving hair. I feel like at this point you really feel that it is happening...iam definitely having chemo treatment because of the bold head looking at me every morning in the mirror. I miss my hair already.
I think I am developing yeast infection. And mouth ulcer. Joy...
I cooked and cleaned today. Just to get myself ready for tomorrow. My second chemo. After first one I was thinking I am not gonna get worried about my next one. But I am nervous. Counting hours... Might go downstairs to watch some film in the middle of night if I can't sleep.
Just wanted to say hope you guys feeling ok those who in the middle of their chemo cycle and good luck yo those who going tomorrow. Mine is at 12. Big hugs guys!!!
Member

Re: January 2019 chemo starters

Hi Lorraine.1
Thank you for this really good advice. I wondered if the advice to avoid sour dough was to do with the starter. I only occasionally buy sour dough so it’s not a problem and like you, I am making do with supermarket Greek Style Yoghurt. Its a shame re; thrush prevention though...The advice from Guy’s and Thomas’s from the link I posted earlier; I found useful, very clear. Sometimes info gets distorted, but this was very clear.
I am sorry to hear that you have previously suffered from hair loss 😒 Good luck with the cold capping this time round🤞. The information you give about rosemary oil is very useful. Do you just put a couple of drops in a carrier oil, almond oil or something? I think I will invest in a good quality oil, it will smell good too. Thank you😊
I am glad to hear that a complex B vit and vit D, are good for improving hair growth. I have taken those vits for sometime now, along with a good magnesium to aid the absorption of vit D. My Onc told me that everyone in the UK should take vitv D. I know a lot of women diagnosed with breast cancer often have low vit D levels before diagnosis. I know I certainly did, so now I’m just on a maintenance level during chemo, making sure it doesn’t interfere with chemo.
I am not sure what biotin is, but I will research it now, thank you and I will keep in mind Waterman’s shampoo when my hair starts to grow again. I am dreading the fact that it may well come in grey because my hair was going slightly grey at the temples and crown, but the blonde highlights hid it.
I am massaging my scalp with bio oil just now 🤣 I had it in my cupboard and decided that if it was good enough for my scars, it would be good enough for my scalp and keep those follicles moisturised until I found something better. I will now buy some vit D and rosemary oil for this purpose.
Many thanks and good luck if you have round 2 tomorrow .
Sunnydazexx
G
Member

Re: January 2019 chemo starters

Hey Lorraine.1 you are all over this hair stuff! Thank you so much for all your tips, truly appreciate xx
Member

Re: January 2019 chemo starters

Hi B74 and sunnydaze, the reason live yoghurt and sourdough are not advised is they both contain bacteria, sourdough bread is made with a 'starter' which is a combination of yeast and bacteria. Ordinary bread is made with only yeast which isn't bacteria. I miss both but for what is a relatively short period in my life of treatment I have decided not to take any risks and follow the advice given, frustrated though as live yoghurt protects against thrush which I have read can be a s/e of EC and Paclitaxel. Am making do with supermarket greek style yoghurt Smiley Frustrated

 

G, you asked about hair supplements further down the thread. I've had hair loss before from anaemia which was really upsetting. I'm prepared if it happens to me again this time from chemo but I decided to do all I could to prevent it, including cold cap. I asked my onc if I could take biotin and b complex throughout chemo and she said yes but I had to stick to the EVM, for biotin it's 900ug. Rosemary oil also good for the scalp (came out as good as minoxidil in trials) and vitamin d oil. Also, if your internal vitamin d level is low (which is really common in the northern hemisphere) hair won't grow as fast, so might be worth asking them to check your vitamin d, if they haven't before you began chemo. Finally, I swear by Watermans shampoo for fast hair growth. Also to avoid build-up neutrogena /t-sal shampoo is excellent. I hope this is of use maybe.

 

Good luck to everyone for the next round xx

LB
Member

Re: January 2019 chemo starters

My husband and I cut my hair and then shaved the rest off - wow - I quite like it 😊 the discomfort of the prickly scalp and the horrible pulling is a thing of the past. I have found that it’s shedding from all over 😊
Good luck to those going for their next session and hugs to all 🤗
G
Member

Re: January 2019 chemo starters

Hi Sparkie2001, just a quickie on the hair. I had long hair and my hair wasvwry important to me, my comfort blanket etc socially. It started to feel like it had been in a tight pony tail for a month and released so it felt painful every time I moved or touched my head. It then started coming out Saturday/Sunday a little every time I touched it, which as you can imagine became my new obsession unless I always messed with my hair subconsciously!! I knew the inevitable would happen as soon as it was washed but I had no choice on Monday after my kettles class, two thirds came out in about an hour with the washing and the combing and this just continued. I had it clipped last night by my hair dresser but right down so I do look pretty bold but at least minimal hair will now fall..I found the emoji for this too, who knew 👩🏻‍🦲! With regards other hair loss, definitely falling from body too but I wouldnt have noticed as such just yet if I wasn’t heightened in looking for hair loss!!! It is emotional every time I have to discuss it with a new good friend or family member but when I am on my own I am okay with it, and I can feel a weight has lifted with the worrying of if, when and how it would happen.

Thank you everyone for advice re eyebrows and eyelashes. I have invested in Revitalash for lashes and one for brows but the brow one references not being used in chemo, can’t recall exactly what it said, I think I took it more that it hadn’t been tested but I’m not sure whether to continue to use or not, will take a look at the other suggestions.

Wishing all the best as we approach a big day for some of us tomorrow and I hope the move into some well deserved good days for others xx
Member

Re: January 2019 chemo starters

I’m still feeling nauseous this morning. Urrgh, (day 6) but going to get up and make some soup, take my mind off things and stop me going stir crazy. Hey Sparkie2001, can’t beat snuggling down to a bit of Pepper Pig when the going gets tough. Incompetent Daddy pig and George’s shower cries. Loved it all. I remember those days fondly.
I’m not usually one for crap memes, but I liked this one. I just stumbled across it as I was searching for a celeriac and fennel soup, as you do.
I think the soup (and the meme) are good for the cold winter days and nights. .Its freezing temperatures out here in the countryside.
“I will love the light for it shows me the way.
Yet I will endure the darkness for it shows me the stars.”
Apologies now, if it’s too crass, being house bound and yucky is getting to me. 🤣Have a grand day ladies and if you are losing your hair, the prickling, migraine heads and raw emotion came as part of that particular hair loss package for me.😢😢😢 It’s all just weather passing us by. It will get better.
Sunnydaze
Member

Re: January 2019 chemo starters

Morning all! 

 

Glad you're feeling a bit better today Stuckat14 :-) If it's any consolation I suddenly seemed to emerge from the land of spaced out oddness yesterday exactly a week to the day of my first chemo and feel pretty much back to my normal self now. It was very strange, almost like someone had switched my brain back on. My mouth feels rather revolting though so that's at least one sign that the drugs are still working their magic. 

 

Re: hair loss - for everyone curently shedding - does it all start to shed at the same time from all areas Smiley Wink ?

There are parts of me I haven't seen hairless for years! I fear the drains will be blocked in no time. 

 

Re: kids - yes it adds a whole new layer of cack to what is effectively the worst thing I've ever been through (and oh how I used to whinge about work/childbirth/life). It's the endless worry that I'm screwing up my seven year olds childhood versus the stark realisation that if I don't take these nasty drugs I will be screwing things up for all of them even more. He seems to be coping okay with things although probably getting fed up with repeatedly being asked by me if he's okay. Luckily my two year old is two and therefore remotely disinterested in anything not related to Peppa Pig and the baby is too busy learning to crawl to care if I am bald and sad at times. It is hard with small kids but I fear it would be much harder for you guys who have older children who are far more aware of what's happening and more likely to worry. I take my hat off to you all. I like the idea of the photos though - great idea. Soon we will have luscious locks again. 

 

Hope y'all have a good day :-) 

 

 

 

MBJ
Member

Re: January 2019 chemo starters

I hope you are feeling better today. I will be looking for the eyebrow stuff you suggest. I am sure when you feel a bit better you will have a go with it.
Member

Re: January 2019 chemo starters

I bought some lipocils stuff from Amazon for eyebrows and lashes. Have felt mainly too horrendous to remember to put it on so far (still in first bad bad week) but saw it recommended on Instagram (@cancerwithasmile) . My kids are 5 and 2 and I've talked a lot about losing my hair- we've joked about it and they've tried on my wig etc but ibdont know how they will cope with seeing me when it actually goes- it's been a very teary week for all of us with me in bed and them having colds and missing their mum etc.
Anyway, I feel a tiny bit better today so fingers crossed it's true and there is an end to the nausea.
G
Member

Re: January 2019 chemo starters

Thank you Sunnydaze for your accurate and kind words. Aren’t children amazing, they are going through something I can’t ever imagine and that is hard as a parent as you always draw on your experience to nurture and lead but we are learning this all together, I guess a different kind of bond will be there at the end of all this.

One thing I wasn’t prepared for was the prickliness u feel when turning over on my pillow ladies, not sure if unique to me or others had this...actually quite a few ow moments 😂

Hey B74, I agree it is another brutal thing to happen to our bodies but I am learning that I have surprisingly quickly got used to the new normal on other things (still emotional but accepting) so I am hoping I will here too 🤞, will see how a full day goes as all I really did today after was hug my hubbie and girls and go to bed!

I am already worrying though about eyelashes and eyebrows as they stand out now and as other areas have started shredding too...always a positive, saving so much time in the shower😳, I am really hoping they don’t start as think that will be hard. Anyone doing anything here to help protect them? Also anyone else going to continue to cold cap after the shave to help stimulate the follicles? Last question, anyone been advised to take any hair supplements etc or do we have to wait until after chemo?

Loads of hugs xx
LB
Member

Re: January 2019 chemo starters

My hair has started to shed in earnest today and I’m surprised at how upset I feel. I thought I was fully prepared and upbeat about it but it feels shocking. You’re right Sunnydaze one step closer to the end of this journey. Hugs to all x
Member

Re: January 2019 chemo starters

Hey G,
Sending you love💕 re; hair loss. Well Done for braving the shave. I sent my girls a photo before hand too (12 &15) I think it helped them too. They have been supportive “We still love you. You’re still our Mum” and that meant a lot. I was quite gutsy about it at first and I think they picked up on my positive vibes and started creating a new rock chick image for me at first. Now, I just wear a hat in the house and it’s becoming the new horrible normal. I hate looking in the mirror too. Going bald is such a “cancer patient” look isn’t it and so frightening for our children. I am sure you are dealing with it really sensitively G with your kids. My eldest saw me crying when it started to shed. I felt bad for exposing her to my tears, but then again it’s not good to hide our emotions too much either, because they just learn to hide emotions too then and then that’s not healthy . Just think, every horrible step we take is a step closer to better health and an end to this horrendous journey.
Sunnydazexx
G
Member

Re: January 2019 chemo starters

Hey B74, still in awe of your fast, amazing.
Also quite in awe of your memory, yes it was I worrying about my 11 & 9 yr old girls as the hair thing has been an upsetting topic throughout for them. They have been very upset tonight and neither have seen me yet without a hat thing on although both have looked at a photo I took which has helped to calm them and demystify it a little, hoping tomorrow they are brave enough to look but I will take their lead here. I hope your shave goes ok, I was quite emotional through it, more than I thought I would be as usually can hold things together somewhat but then I have had an emotional couple of days generally.
Wishing u well with your fast, your shave and your chemo xx
Member

Re: January 2019 chemo starters

Live Yoghurt.....B74. I would carry on eating it if you have not been told otherwise. My friend had BC when she was in Hong Kong (she had top class treatment) and she was never told about it either and ate it all the way through treatment. My hospital told me to avoid, but here is a good link from Guys and St. Thomas’s hospital and it offers clarity. It says “generally considered safe, but use with caution” re; probiotic yoghurt.
https://www.guysandstthomas.nhs.uk/resources/patient-information/cancer/diet-and-chemotherapy.pdf
B74
Member

Re: January 2019 chemo starters

PS none of the doctors or nurses has said anything to me about yoghurt! Also, I don’t see the problem with sourdough. Yes it’s made with a live culture - but normal bread is also made with a live organism (yeast) - both are killed by cooking.

I’ve eaten yoghurt & drunk kombucha with no ill effects that I can tell. What did they say the risks were?
B74
Member

January 2019 chemo starters

Hi everyone - wow - I went to sleep and woke up to a new look forum and a dozen new messages! G how have your kids reacted to your bald head? (sorry if I'm getting mixed up but I think it was you who said they were really worried about it?) Sunnydaze I'm sorry you're feeling worse this time around - oh dear - not good to hear! - but also not really surprising I guess. This stuff knocks you around so it must get harder & harder for our bodies to bounce back. I certainly don't feel as good going into #2 as #1. Sparkie2001 - I don't know how you're doing it with little kids. My youngest is 7 and they've been on school holidays for the last 5 weeks which has been tough enough, I'm counting the days (6) til school goes back. (Only so I can get more rest time!!) Wantolive - geez I wish your husband would step up and support you by learning how to clean!! I can't believe you'd be up that late on chemo night cleaning up his mess. Time to put your foot down?

 

I'm 19 hours into my fast ready for next infusion Fri, feeling a bit weak but the fasting doesn't seem as big a deal as last time, maybe because I'm just so scared about the infusion and afterwards. I now just want it over and done with. Today I'm taking the kids roller skating and to the orthodontist and preparing a couple of meals and tonight I'll shave. I've been putting it off as long as possible but last night the back of my shirt was like a rug and lying down felt like pins in my head. 

 

Take care everyone, thinking of you all xxx

G
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

I have done it ladies, hair has gone. Still in shock but feels better and I hope emotionally I will just get on with it. Eventful week really..port yesterday (not very nice to be honest), hair today, second chemo Friday (onc going to give me different sickness drugs so fingers crossed)....bloody exhausted!!! Wishing u all well xxx
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Nausea can make you feel miserable I know. But you have almost passed those worse days and Iam sure you will feel better and better every day. Of they sort out yoir drugs better next time you will feel the difference. Big hugs. I know what you mean about kids and every day life. My husband can't even use dishwasher. I was up at midnight on my first day of chemo and cleaning my kitchen as he left it in such a mess.
It seems at the moment that this 3-4 months will never end but iam sure we can get through it. Big hugs to you x
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi Lorraine.1
Thanks for the info re; sourdough bread. I wasn’t told that one, but of course it’s live too isn’t it. Harrrumph. It must be so tough going through this by yourself. I hope you have good people close to you to support and help out. You realise who your friends are through all of this.
I’m pleased your hair is holding out girl, even if you lose it, it will grow back the same as it was before. I didn’t think I would mind losing my hair, but it has been a really tough gig looking in the mirror
Sparkle, your post made me smile when you mentioned your washing basket. It’s an achievement when I’ve managed to empty mine. My kids are at school though, so it must be hard for you ladies with little ankle biters still at home during the day and needing attention.
I’ve just made myself go out for a walk in the winter sunshine for about a mile and I’m keeping drinking loads of water. These two things definitely help with the se’s.
Sunnydazex
Member

Re: Hi everyone, it's good to know I'm not the only one strug...

Hi stuckat14, I am on 4x EC (1st one  was 8th Jan) have you asked for Emend for your sickness? It's expensive to NHS but a very good drug. If they haven't given it to you please ask your onc or bcn to have it for the next round. I suffer with nausea quite easily but this helped me enormously. You should have it before your chemo then each day for 2 days afterwards.

 

Sunnydaze, i really miss live yoghurt too and not allowed sourdough bread either! I'm on 4 x EC and  was told bloods start dropping on day 7 and come back up day 14 onwards, onc said the drop can start as early as day 5 though. Please take it easy and rest and I hope you feel better soon.  

 

Hi Wantolive, I do try to get organised before chemo. Live alone so try to have a full fridge and freezer in. I ate pretty lightly first few days but on day 5 was back to normal eating, no taste changes as yet. I've been brushing teeth or rinsing mouth out with salt water each time after eating and for first time in my life using a tongue scraper as taste buds are on the tongue. If anyone here is on paclitaxel I read that sucking ice lollies when you have infusions helps with taste thing - not sure how you keep them ice cold though in chemo unit. I have a cool bag but it's not a freezer. 

 

G, thank-you for your good wishes hon.Hair is holding on for now, I'm day 15 since first one and shedding could happen any day so thanks for the symptoms. I think i had a tingling on top of scalp on day 12 but it went.I definitely will continue to cold cap even I lose it all because from what I've seen hair does grow back faster afterwards and same as it was before. Got 3 friends all early 40s going through this and at different stages (some had chemo first). I'm going to continue with the vitamin D oil at night too.