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
Hi, good idea to talk over all your options, there's so many choices for recon.. Lots of ladies on here will have had all types so good to get advice from them too. I have friends who have had different ops and all very pleased. I think you can expect a slightly longer stay after recon but enjoy the rest! I think youll get the masectomy node clearance and recon at once. I just had to have chemo in between.
I did have radiotherapy too, 15 sessions after I'd healed from now clearance.. That was by far the easiest bit... After chemo anything it is!!
Hi Kip, thanks for the reply.
Wow! Home the same day after a mastectomy! That’s quick, although I don’t suppose anyone wants to hang around a hospital.
I think I will be going for reconstruction but I have yet to meet the surgeon and oncologist to go over my results, so don’t know my plan yet.
I presumed that I would get everything done at the same time, mastectomy, reconstruction and node clearance but I’m now thinking that seems an awful lot.
Did you have radiotherapy too? Xx
Sorry for the delay in replying. My masectomy surgery was so straight forward, I went into theatre at 9am, and was home on same day at about 3pm, I had a drain in for about 3 days and it wasn't too bad. They gave me a little bag to carry it in. The scar has healed really well and quite painless, altho I didn't have reconstruction. Best bit of advice is to do the exercises given to get movement back in your arm, mines fine. I also had node clearance in a 2nd op and again in and home in a few hours, had a drain for about a week that time. They used the masectomy scar and that healed well too. I still do exercises c each day just to ensure movement v it a good. You've done chemo so the ops v will be fine. Just remember not to over do it.
I have just finished my FEC-T x6 just before Christmas. I have just had my ultrasound and mammogram today and back for MRI on thurs. oncologist appt not for another 2 weeks. I believe I will be having a mastectomy and full node clearance too, how did u find the surgery? Did u have a drain and how long was your recovery. I hope you don’t mind me asking xx
Thank you lilyb84. I also have a results appointment Friday. Hoping all goes as well as it can go for you with your appointment on Friday. Xx
Best wishes for tomorrow jemmalou101. Hope it goes as well as it can for you too. Xx
Hope your doing OK too after your second surgery lvp84 Xx
Sending loads of luck and hugs for tomorrow Jemma!
And glad to hear you're recovering well Shablah.
I'm now off sick from work until baby arrives, no decision yet but looks likely it'll be next week. Things may change though, seeing obstetrician and consultant on Fri.
Hugs to all! x
Sending a hug for tomorrow... Any questions just ask, not sure if i had the same chemo, I had Fec T x 6 but happy to offer any tips to get through it.. Best advise is take it day at a time. Are you cold capping?
Thank you for posting kip, it really does help newbies like myself to see that there is a light at the end of this very dark tunnel. Delight that you are out the other side and well and healthy and that you still keep in contact on this site.
i have just joined the chemo group today and already found a lady who’s having the same treatment as myself so that’s reassuring as it’s a tough time but it’s good to know your not alone.
I have my pre-assessment last night and the nurses couldn’t be more supported and link you advising to ring them over the slightest little thing they are there to help and said they have a lot of medicine that can help with a lot of symptoms so just going to keep positive and hope for the best!
take care of yourself xxx
Just saw you are starting chemo on Wednesday, wanted to say good luck. I had chemo in 2018 (summer) and whilst some days are tough, its doable, I got through it, managed to work pretty much every day (albeit from home) and still went out and did nice things. Take it slowly, listen to your body and don't be afraid to call the chemo hotline you get given if you are struggling, they have so many different drugs to combat sickness etc and you just need to ask and they'll sort you out. I get you when you say you are "looking forward to it"... I found once treatment started I felt more in control. I am now months clear, and almost 13 months since end of treatment.. I had the lot, mastectomy, chemo, radiotherapy and node clearance, so any questions ask away.
Have you joined the January 2019 chemo group? There should be one set up now under the undergoing treatment section, you'll meet other ladies starting chemo at the same time, its a great way to find tips and hints to get by.
Welcome back, did you have a nice break? I know you said you was going away for a few days for new year.
I had my post op check today and all is healing nicely apparently, so that's good news. None of my results were available unfortunately what with the new year bank holiday so I have to go back on Friday for the results.
I know what you mean about being excited to start treatment and at the same time it's very worrying. It's such a strange thing that we are having to go through. Fingers crossed for you for Wednesday and that it doesn't leave you feeling too bad physically. If you feel up to it let us know here how you are. I'll be thinking of you xx
Chemo starts for me this Wednesday 😬 😟 am excited to get going as I’ll still have this lump until I finish my treatment (mid may / June) and the most frightening part knowing it’s still there but fingers crossed it will do it’s job and shrink it so better options for surgery!
How are you feeling now Shablah nearly a week on following your surgery? Do you know your next steps?
any news in when the baby is making his / her apperance? Did you decide on delivering at 34wks lilyb84?
I am thinking of you all in your next steps, as daunting as this is it’s good to talk about it. xxx
I'm sorry you have such a hard decision to make but I'd say go for option 2 too. It's seems like the best thing for you. I'm sure your baby will be fine at this far along in your pregnancy, I know it's a tough time for you and having 2 with close birthdays is nice for them and thinking positively you'll be able to give them joint birthday parties which they will probably love! Try to have a relaxing weekend and keep us up to date with what you decide. Sorry I missed your birthday completely, hope it was a good day for you xxx
Thanks Shablah! It was on the 1st and I had a nice day thank you 😊
Glad to hear you're doing okay and keeping up the exercises.
I had the results of my biopsy on Thurs, the extra calcification they found is DCIS so I'll need a mastectomy. But we have to decide whether to have surgery before delivering baby (in which case they won't be able to do a sentinel node biopsy) or deliver baby first so they can do the full screening for me. If we go with the latter I'll be induced in less than two weeks' time at 34 weeks! No idea what to do but everyone seems to be leaning towards the latter option as it's potentially slightly better outcome for me. I'm not ready to meet this baby yet!! We're going to end up with two children very close together in terms of birthdays as my son's 4 on the 20th...
Hope everyone is doing okay xx
Just wishing you happy birthday not sure if it's today or yesterday, sorry if I'm late hope it was a good one xxx
I'm doing OK at the moment. I've been doing the exercises religiously. They were hard the first day as I couldn't fully extend my arms, I still can't but I'm doing as much as I can.
I have a post op check on Monday not sure if I will get more results or not and I'm praying they got enough margin and I dont have to go through it all again.
Hope you are both well Jemmalou101 and lvp84 wishing you all a relaxing weekend xx
Thank you jemmalou101. I feel so much better already - knowing the most of it is out of me. Happy New Year to you xx
I got through it, if I can do it, no doubt you can. I feel so much better now. Thank you for posting. Happy New Year to you xx
I'm home, so I got through today, yay! I'm feeling so much better knowing that lump has gone now, but the bad news is I was supposed to take part in that clinical trial but unfortunately the cells I have were not compatible with the fluorescent dye they use, they said it wouldn't bind to my cells so they didn't use it on me as it would of been pointless. I'm pee'd off about that but glad the surgery is over, for now anyway, praying I wont have to have it again but hey ho if I do at least now I know what to expect. I'm already feeling better and stronger mentally knowing the most of it is now out of my boob! I feel whacked out physically and its an early night for me despite it being New Years Eve. Happy New Year to you and thanks for posting and your good wishes xx
Hey Shablah, thinking of you for the surgery! I’m also excited for you as means lump is out. Best of luck, let us know how you’re feeling when you’re out. I’m sure you’ll be fine
Well we're all in the same (or very similar) boat right now! I hope you can relax a bit over the weekend x
Yes I'm right with you on the surgery thing. I wouldn't have reconstruction either. There's so much involved in that and it's such a long surgery, especially having it done at a later date and going through the expander thing and having fat taken from somewhere in your body to make a new breast . I know I wouldn't want do it. I'd be happier just putting a chicken wing in my bra! Much easier to deal with, for me at least!
Yes my hospital does have a support group attached to it and I will be going along at some point. I think it would really help to meet people going through the same thing. Thanks for posting when you have so much to deal with yourself xx
If it's any consolation I'm absolutely terrified of surgery, and the prospect of possibly having multiple types over the next few months fills me with dread. If I need a mastectomy I can't see that I'll cope with reconstruction as well as I can't even think about it without feeling sick! But I'm trying to take one day at a time and things will feel more 'normal' when they're actually happening! My BCN said everyone has something that worries them and that thing is different from person to person. My hospital has a BC support group which meets every month, is there anything like that near you? Could be good to meet others who've been through it or are going through it, especially as you found the someone like me service so helpful xx
I've spoken to a volunteer from the someone like me service. I'm just a wuss with anything medical and yes one of the BCN said she will refer me for counselling but apparently there's a long waiting list. It's as lvp84 said below you just feel like you are the only one going through this which is really not the case. I will feel better this time next week because my surgery will be over x