Sorry you are going through this with a new baby and a toddler it can't be easy. I don't have any advice for you as I'm not in the same situation, but just wanted to say I feel for you.
Jemma has given you some good tips. I know you don't have family close by but I was wondering if you could contact Macmillan or a local charity to help give you some support? I know some will help with housework, food shopping and things like that. You need more rest than your getting. Hope you start feeling a bit better soon xx
Awww lilyb84 , sending you a big hug! Chemo and new baby seems so unfair for anyone to cope with but you will get through it. It’s not easy but definitely bearable, I found the 1st cycle was the hardest so hang in there it does get easier so stay positive.
i always had fatigue until day 10 (once the stomach injections stopped and then I tended to feel a lot better and more normal). so try and take it extra easy in the first 10 days. Nap when you can and try not plan much for the week after chemo, washing can wait till the following week when you have more energy. I just used to make sure kids had clean school uniforms and hubby had clean work shirts everything else could wait.
Take paracetamol for headaches and aches and pains (make sure you check temp before hand to make sure you haven’t got a infection coming on). I also bought some Manuka honey 525 from Holland and Barrett for my throat (expensive but really good) and would defo recommend this for mouth/throat. I had mouth ulcers and sore throat and they were gone in a day, and also add slice of lemon in the morning to the honey when you need a little natural boost. plan little walks, as fresh air would make me feel better.
Just think we are getting the worst part over 1st and surgery and chemo will be a breeze after chemo!
Honestly my best advise is accept help! Let friends or family watch your baby for a couple of hours so you can rest and recoup and don’t worry about the house as you will get your energy back before your next round. Hopefully baby will start sleeping through within the next couple and weeks and you’ll manage to get more sleep, for me lack of sleep was the worst and I didn’t have a newborn.
Your doing amazingly, keep positive 🌈✨ xxx
How is everyone? I'm feeling less well now post-chemo - have felt very cold-y/flu-ey for most of this week, everything aches, sore throat and headache and now a cough too 🙁 Doesn't help I'm only getting 3 hours' sleep a night! I'm napping when I can.
Jemma did you continue to feel okay? I'm on day 13 now.
Lilyb84 I found EC completely bearable, day’s 4-5 where always my worst day’s and then I’d be back to normal, so you’ve defo got this.
I have said all along if you have a good positive mental attitude it really helps, and keeping active and drink lots of water 💧
sending you all lots of positive vibes.🌈👍🏼
Sounds like your doing really well, that's good to hear after what you've been through already.
I'm doing really good too, thank you. I've done two weeks of rads now and I'm fine. I've been strictly following all the advice I've been given like keeping active, moisturised and hydrated so I've been drinking copious amounts of water. It really does help the fatigue. I'm a bit sore and peeling but in general overall I'm feeling fine.
Have a good weekend xx
Hope you're all doing okay! Thanks for checking in, Shablah.
First round of chemo has been fine, I felt quite positive going in and have been really lucky I think as the side effects have been minimal. I'm more wiped out than usual, even accounting for the newborn, but overall it's not a patch on last week's stomach bug!! So can't complain.
How are you doing? x
Another week done for you all. Hope you are all doing ok xx
Lilyb84 hope your first round wasn't too bad after your false start XX
Wishing you all a good weekend 💐
Sorry I forgot to say I sent you some info about the London Maggie's, not sure if you are interested or well enough or not but still I've PM'd you some details, hope that's ok X
Yes that's the best thing to do. Just take every step as it comes. I sort of shut off when I was first diagnosed I didn't really want details, and I went into terrible shock. I just wanted a surgery date and that was it. Then I dealt with whatever was coming afterwards that was just me though, that was the way I wanted to deal with it but also because I'm a terrible wuss with anything medical. I see you have a surgery date not long away now so just focus on that for now that's enough to deal with but I will say, after all that you've been through already radiotherapy won't be too bad for you xx
Ah, I actually know nothing about radiotherapy. Just taking every step as it comes. I think it’s about 10 weeks after surgery I start.
I’m presuming I will be the same as it’s also my left side.
How much more have you to go? I am mon to fri for 3 weeks which is a pain as it’s an hour drive away, but has to be done.
mom presuming everyone is 3 weeks too? Xx
The actual treatment literally takes few minutes but because mines on the left side I have to hold my breath to move my heart out of the way so it doesn't get zapped during treatment, so they spend quite a bit of time setting you up. They just move you around and position you and draw on you while they talk in strange numbers while you lie there on the machine XX
There wasn’t much options for me, unless I had the mastectomy and then recon later. But we are the same, a 2 year waiting list when I decide on recon, plus the surgeon also said that they would have to look at maybe looking at pig skin as all excess skin would have been removed at mastectomy therefor when it came to recon there wouldn’t be enough skin. I am an E cup so yeh op Isi g muscle from the side wouldn’t be enough and they would need an implant under it, but obv the implant is not an option if I want recon before radiotherapy.
The nurses and surgeons all felt that the DIEP was the right choice to make, but I must admit I was put off slightly with the length of time in hosp and also the recovery. Prob made harder as my youngest is only 4.
Im sure which ever u decide will be the right thing for you.
how long does radiotherapy take everyday? I hope your skin isnt too sore for long.
I always find it strange that the stuff that makes u better, also makes u feel awful. Xx
Hi B4. Sounds like you are doing well, thankfully. You too JemmaLou sounds like you are doing well even though you still have some tough decisions to make in the future.
Radiotherapy was also described to me as a breeze after chemo, which I'm sure it is with all that you girls are going through right now. I'm a bit sore though, when I showered this morning i've peeled quite a lot already so I'm glad for this two day break from it.
Hoping you all have a good weekend. I'm staying in and having a lazy one as the weather here in London is abysmal. Xx
Sorry to come in this group of younger and beautiful ladies.
Glad to know that radio is like a breeze... Im finishing my last session of chemo (4 EC and 12 Paclitaxel) hopefully on 27th March then radiotherapy. I am feeling better today with my chemo yesterday.
You take care dear!
When I meet my breast consultant back in December lots of options where discussed. It was quiet a lot to take in (and all depends on chemo outcome) so glad I am meeting them again to discuss further, think I was still in shock as this was all discussed in the meeting when I was initially diagnosed.
My BC is pretty large 4-5cm so chemo happened before with hopes to shrink it is the plan of action at the moment and then I could have a lumpectomy with LD flap to fill the area out (also have big breast 36DD) implant was out of the question for me too as I will be having radiotherapy too but if chemo doesn’t shrink the area would be mastectomy with DIEP flap the same as you. Don’t think I would cope with delayed reconstruction, especially as I have been told there is a 18-24 months waiting list 😳
It’s such a hard decision especially the DIEP as recovery is a bit longer but the overall outcome will look better. I’ll be thinking of you on the 3rd it will be here before you know it! How are you feeling about your decision??xxx
its always a good feeling to finish another part of treatment, especially chemo.
I got my date yesterday, 3rd March so not too long to wait.
I am having a mastectomy with DIEP recon and full node clearance. I wasn’t allowed implant as I’m having radiotherapy afterwards.
what’s your thoughts on surgery? Xx
Glad to know radiotherapy is going great for you Shablah, I meet up with a lady this week and the only complaint she had was it slightly burnt her skin and made it itchy but they gave her cream so she was good (said it’s a breeze after chemo)
lovely to hear that you and baby are both doing well lilyb84, I cold capped but unfortunately it didn’t work for me and on day 15 of my 1st session my hair was coming out by the bucket loads, went really thin round edges and was not my hair and was making me so depressed so I made the decision to shave. It’s completely bearable but like you said session 2 I didn’t use the cold cap and was in and out under the hour and a half. Plus I found the waiting and hair slowly coming out effected me more than just shaving it off, I felt in control. I have a wig which I wear when I do the school runs and if am going out out, but tend to wear just hats or go ol natural if am around friends and family. I think I just accepted its only temporary and hair will grow back, plus it’s a sign that the chemo was working and killing the cells.
i am having EC (having 3rd and final session on Wednesday before moving on to paclitaxel weekly for 12 weeks, with hormone therapy along side) so if you have any questions or worries feel free to ask.
fingers crossed lefteye84 you get your new surgery date soon, and your feeling better soon! am meeting with my breast consultant early March to discuss my surgery options, are you having mastectomy or lumpectomy? Feel like this is a decision I will need to make soon and I don’t feel ready to make the decision.
hope everyone has a lovely weekend , After the storm always comes a rainbow 🌈 keep positive ladies xx
Glad to heat ur little one is doing well.
Just thought I would let you know my experiences about the cold cap. I have finished my chemo and awaiting surgery (supposed to have surgery last week but was cancelled due to infection)
I used the cold cap throughout my chemo (I had 7 sessions in total) yes it does add time on to chemo, infact it doubles the time almost, but for me it was totally worth it. I found it uncomfortable for the first 10-15mins and then you don’t feel it, so if u decide to go for it, just aim for getting past the 15mins. Probably the most annoying part for me was the strap to hold it down. I still have my hair, although it is def is thinner but I had really thick hair to start with.
Hope all goes well with your chemo xx
Oh sorry your mum's not closer to you. You could do with some girlie support around you right now. But you have been really strong and great so far, and your daughter will spur you on. You got this girl 💪 😘
My mum lives 60 miles away sadly! Hers was DCIS so she had very similar treatment to you and no chemo fortunately.
All three cousins on my dad's side are also being treated for BC at the moment, they're all 20-odd years older than me so it hit around menopause for all of them. They're all 60 miles away in a Dufy direction. Would be nice to have some family support with cancer treatment and a new baby but never mind!
You've had a lot to deal with, wow!
Didn't realise your mum was going through this too. That's a huge support for you. You have someone on your doorstep who totally gets it, that's brilliant for you, and yes the different appointment times can be annoying because you can't plan anything but still it's only a temporary hiccup not a big deal in the grand scheme of things.
So great to hear your daughter is doing so well and you sound very positive which is great.
I've talked to a few ladies in my support group who couldn't tolerate the cold capping, they all have wigs but you couldn't even tell they were wigs and they are NHS wigs too, things have improved considerably with these things.
Wishing you all the best for this Monday xxx
Glad to hear radiotherapy is going well! My mum has just got halfway through with hers too. Her main issue has been that it's been at different times every day which makes it really hard to plan work around!
Baby is doing really well, she's a little superstar 😊
I was meant to start chemo last Monday, turned up and was in the chair ready to go and it turned out they didn't have my drugs ready. Rebooked for Thursday but then we all came down with a stomach bug on Weds so had to cancel. Trying again on Monday!! I'm having 4 cycles of EC then 4 cycles of docetaxel with targeted drugs (forget the names but one is Herceptin), then will have the targeted therapy for another 14 cycles after that. And surgery and rads too although not sure of the timings.
I still can't decide whether or not to cold cap. Partly I feel like it's a lot of extra time and hassle and then potentially I'll have rubbish hair which I'll be self conscious about, whereas if I don't I'll at least know I'm definitely going to lose it. But I've also heard that it reduces the risk of permanent follicle damage, and I wonder if it's at least worth trying. But then I burnt my hand the other day and had to hold it under cold water and only managed about 2 minutes as the cold was unbearable... 🤣
How is everyone else doing?
Well just a quick update. I've just finished week one of radiotherapy. All ok so far for me. I'm sure this part will be a breeze for those of you having and going through chemo right now.
Thinking of you all and hoping you are all doing ok. Please post your latest updates when you are feeling well enough to, would love to know how you all are XXX
I was started on ECX4 (first) followed by Paclitaxelx12.
i have just yesterday finished 4th inj of Paclitaxel... I hv coped Ok with side effects till date, 2 months more to go 🤞(hope all remains well). Now my chemos are in QMS on Fridays as I live in Bromley.
how about you?
please keep in touch, would be happy to talk on phone/ meet up if you feel up to it.
Sorry to hear you are going through this too. I hope you are coping well with your chemo. How many do you have to have. How far along are you in your treatment? X
I have seen your msg just now, though it has been over a month but just to let you know that I am having my treatment in Guys as well. I have grade 3, 2 cm IDC (ER+/PR+/HER2 neg) with negative LN.
I am currently having chemo.
Sending you best wishes
Kip, you are so inspirational! Thank you for your honest post, you’ve hit the nail on the head I just don’t want to be seen as a cancer patient to the outside world!
Your wig is amazing, it looks so natural... hopefully I’ll get one ordered this week just hoping hair lasts long enough so hairdresser can match the colour and texture, defo don’t think the bald look is for me! My new hats came yesterday and look ok too, so just going to start wearing them and getting used to them too!
Delighted that your hair has come back this is another one of my worries that once it’s gone it won’t come back, so big thank you again for posting it’s really helping me to see some positive in this journey!
While I have time.. Just wanted to say thanks to you and the other community champions for keep on posting here, even though you are out the other side of treatment and your post isn't directed at me. It's reassuring to hear from you and your experiences, and all the other community champions like you who keep posting your positivity xx
Hi Jem, just read your post about the hair,. Oh thats a tough time...mine started shedding at about 12 days after 1st chemo. 2 days later i braved the shave. I wont lie that was hard. I suddenly felt and looked like the cancer patient. BUT. Once it was gone thats another hurdle passed. Do you have a wig? I got a voucher from hospital for mine and it looked great. Also loads of lovely hats and scarves on line. Lots of ladies embrace the bald look too and you develop this warrior mentality of staring out the starers... I would twitch my wig to shock them. Good news is hair stared growing by chemo 5 and now, just over year later..thick anc growing. Ive attached some photos of me along the way..and in the wig
Friday went OK for me. I got a bit emotional, whilst being measured up on the machine, not sure why that happened, I had no idea that would be my reaction and I felt really silly tbh but the staff were all great with me. So feeling better now but still slightly daunted I think you're right it is the fear of the unknown. I've also started to take Tamoxifen, I'll let you know how I get on with that once it kicks in.
Sorry to hear you're loosing your hair. I thought you were cold capping? It is an emotional time and very worrying but keep trying to take the positives from the negatives, I know it's really hard to do sometimes but loosing your hair means you are closer to ending chemo and it all regrowing. Don't worry about the looks and stares, you are bloody strong 💪 and going through a crap time, let them stare! You could always try a turban - there are some nice ones around these days - if you can't face a full on wig. It's good to know though that so far your side effects are minimal, hope that continues for you.
Best of luck for Wednesday let us know how you get on when you feel like posting xx
Hope all went well with your appointment on Friday Shablah, it’s great you finally know... it’s so unsettling the unknown! And I hope you have a plan on the table for your next steps.
1st round of chemo has been fine symptom wise, but hair falling out in bucket full over the last couple of days, and think am not too far from buzzing it all off. 😢😭 It’s so emotional as I know the moment my hair is gone, I am going to feel the stares and the fact that everyone will know whether I want them to or not!
next round is Wednesday so fingers crossed bloods are good and we can crack on, the sooner i have the treatment the sooner ill be done!
keep us updated on your radiotherapy, I’ll be having this once I have surgery so keen to know your experience.
All went well for me, thank you. I'm ER and PR positive but HER2 negative. Relieved to finally know, its been a long worrying wait! 🤪
I have another appointment tomorrow for radiotheraphy planning and a CT scan. Thanks for asking.
How have you been feeling after your first chemo? X
Hi shablah , how did you get on with your oncologist on Tuesday? Have you found out your next treatment and whether you will be having chemo? Xxx
Congratulations on the safe arrival of your little girl 💜👶🏼, also congrats to your little boy on his new role as big brother 💙👦🏼
Sending lots of love your way lilyb84 she’s in the best place and will get stronger every day and will be home in no time 😘 xxx
Great news. Many congratulations to you and your family. One big big hug sent your way, take it easy, look after yourself and your new daughter. Post again here when you feel up to it and let us know how you both are. Well done and lots of love to you xxx
Aww, congratulations on the arrival of your little princess. Im sure she will be very strong just like her Mama, and she’s in the best possible place. Childbirth........ def is something else 😂
How are you doing? Xx
Sorry I've been a bit absent. Had my baby girl this afternoon! She's doing well although is very small and has been admitted to the special care unit for help with her breathing. Glad I'll never have to go through childbirth again!!!
You sound as though you are coping well so far, good news 👍
I had a strange night one night too. I woke up sweating like a maniac and I looked like Worzel Gummige's little sister! Thankfully I can't remember any details of my nightmare and I didn't even have chemo as an excuse 😂
It's strange that we all have the same and yet we are treated so differently. I have my first appointment with oncology this Tuesday. I still don't know if I have to have chemo or not, hopefully I'll find out at this next appointment. Xx
Hope the rest of you girls are doing well. Have you started your radiotheraphy yet lvp84? Xx
Hope you are OK after your recent appointment lilyb84? Xx
Wishing you all a good weekend xx
I got a phone call yesterday to tell me I have an appt on mon with the surgeon 😬 it’s looking like surgery will be in the next couple of weeks. It will be good to go over my options, I guess everyone is so different xx
It’s always good getting the 1st one down, it feels like it’s not the unknown after that.
Totally agree with mummy’s lump, I read it to my 7 & 3 year olds, it was excellent at explaining without going into depth xx
Am having EC for 3 rounds (3 weeks apart) then weekly tamoxifen for 12 weeks then hopefully surgery. Haha mood swings I couldn’t sleep the other day so woke my husband up in a crying/hysterical mess, then I fell back a sleep and then he was awake for the rest of the night 🙈🙈 he wasn’t impressed. 😂 Luckily my boys and hubby know mummy might get moody but understand why, we read mummy’s lump book with them and it was very good explaining possible emotions. Highly recommended if anyone has young children.
I was on the steroids for the 1st 3 days and just finished the injections. Feel more like myself now, tiredness still there but tbh i have got 3 boys so have been constantly tired for the last 10 years anyway! but feel like if this can continue I’ll be happy.
it’s so funny how the same medicine effects people so differently just trying to keep positive and rest. I am off work at the moment, so think the fact am off is helping me recover quicker from the rounds and my work have been so supportive.
long may it continue.... how are you all ladies???xxx
Well done Jemmalou. One ticked off! Glad you are feeling ok, I'm sure the fear was far worse than the deed for me. Keep taking it easy though. Are you having FEC-T? I can't remember. You mentioned the lack of sleep... I remember that well. Are you on steroids? They used to play havoc with my sleep and once I came off them I would have a very emotional/mood swing couple of days but it passed and it usually followed the same pattern each cycle.. kids and hubby knew to keep out the way for a while! I found it useful to keep a diary every day, writing down symptoms and as a reminder of what tablets I'd taken when. You do get to see a pattern to each cycle so can plan for side effects and can tell the nurses so that you get appropriate treatments in place in advance. I would get oral thrush with the T part of my chemo, so once I'd realised they would give me some treatment to start as soon as I felt it coming and it stopped it getting bad anymore.
Glad to hear you are coping well with the chemo jemmalou101. I know it's early days for you but good to hear from you and that it's all positive so far. Xx
Hope your OK after yesterday's appointment lilyb84. Xx
Awww glad to see a plan is forming for you lilyb84, and that your newest addition will be here very soon. Let us know how you get on with today’s scan, will be thinking of you!
MRI results are really quick, so you should have a plan in place pretty soon after, I found it such a relief once that plan was in place and am sure it will come back all clear for you. Try not to worry, I was making my self sick with worry I found my lump in November and only just started treatment so they don’t rush into treatment they’ll make sure it the right decision. Make sure you enjoy the early days with your new baby too!
I Don’t want to jinx myself but feeling ok after 1st round of chemo, sleeping (or lack of) is the main issue but that’s getting better and probably didn’t help coming on my period 2 days after the chemo so also had really bad back ache so that’s kept me awake too , but on the whole it wasn’t as bad as I expected! Still a long way to go but feeling positive that I can do this!
So glad things are starting to move on for you. I know it's not the best set of circumstances for you to be delivering now but at least you have a lovely baby to look forward to.
I am doing well thank you. They are leaving me to heal from the surgery before I start radiotherapy. Still no hormone results yet so I don't know if I will have chemo or not yet.
Let us know how you get on at your appointment tomorrow won't you. Sending you lots of luck xxx
I'd like to know how lvp84 and jemmalou are getting on too. How's it going for you ladies? Xx
Thanks for asking! We decided to deliver baby first so that will be this week. Hopefully will know exactly when after tomorrow's scan. Also had a pre op assessment today and have been referred for an MRI after baby is here so they can decide the best course of treatment.
How was your appt Friday Shablah? And Jemma, how was your first round of chemo?
Re mastectomies, I was told it's a 90 minute op or thereabouts and is day surgery which is partly why I'd prefer that without recon! Don't know yet though if I'll have surgery first or chemo - will have to wait for baby / MRI / team's decision. It will have been a couple of months from my diagnosis to starting treatment which makes me a bit nervous but hey!
Thinking of everyone x
Just checking in on how you are doing? How did your appointment go on Friday?
Sending lots of best wishes to everyone xx