Hello! It is so lovely to be back in touch with you all one year on. In some ways it feels so strange thinking it all happened. I am doing ok too. Back at work but working from home which is odd as well. I am so grateful to not be embarking on this journey now having to cope with Covid as well. A couple of weeks ago I went for my echocardiogram. It was very different being in hospital. Normally I would work in it but it just felt eery. Very bizarre. I have odd pains and lumps and bumps too. I mention them at every possible opportunity to oncology nurse etc but no one seems bothered. I finished my radiotherapy in March and keep telling myself if there was anything nasty it would have been picked up in the planning scan. The lumps appeared directly after surgery so clearly most likely to be left over rubbish from that but there is always a 'what if' worry I think. I see my oncologist via NHS nearme at the end of this month to discuss zolondronic acid and possibly kadcyla (this might not be licensed yet in Scotland to prevent recurrence). I have had 12 herceptins so far - only 3 to go - horrible little stingy injections that they are! Hope you are all doing well. So annoying we missed out on last summer and we are pretty stuck this Summer too but hopefully we are all well and that is more important than going places. In meantime Yay for Tesco shopping slots! Love to you all. Xx
Hello Lovely Ladies ~ how are you all doing?
It's a whole year now since we started out on our chemo journey, where has the time gone?
My life has settled into a new normal and although not fully recovered from all the treatment I feel in a good place, just a few aches and pains to remind me of where I have been and still some chemo brain but nothing too dramatic.
Thinking of you all at this milestone moment and hoping you are all moving on with your lives.
Hi Silverpixie, that is exactly what I thought about the hairdresser issue! Stay safe everyone. Sending virtual hugs. Xx
I am so happy to read this ! I know what a time it must’ve been waiting for the result.
hope everyone is ok and staying safe ..at least with our hair growing back we don’t have to be concerned about the hairdressers being closed!
Mine is growing back like a crinkle cut chip 😂 it used to be dead straight .
Hi lovely ladies
I hope everyone is well and keeping in as much as possible
I had the results from my mammogram today and it's normal so one less thing to think about 🙂
Best wishes ladies xx
Oh my goodness Kaytee. We have our fingers, toes and paws crossed for you here for you mammogram. Xx
I am off tomorrow but think I will see if I can start to work from home. Although my kids are at home and are going up the walls all ready, might be more peaceful at work 🤣
Not due to see consultant again until end of April, but did have a mammogram last week. Fingers crossed it was just routine so hopefully no surprises.
It means though it's been a year since my diagnosis!
Take care everyone xx
Hi, totally agree Silverpixie must be so so hard for those going through chemo now. Kaytee re risk I have had mixed responses. Nurse who gives me Herceptin told me I was at higher risk because of it. GP said I was not because chemo finished 5 months ago. I think nurse was probably right re the immunotherapy which gp had probably forgotten about. On plus side though my white cells etc are normal so I keep thinking of that. Either way Kaytee try to work from home if you can. I am signed off until 27 April but will be insisting on working from home when I go back again. I am taking every possible precaution to minimise risk just in case. Love to everyone. Keep as safe as you can. Xx
Scary times at mo, hope everyone is keeping well.
Wondering if any of you have had any specific advice from drs as to whether we fall into the high risk category?
I am still working part time but I work in an office so I don't see many people as most are working from home, so feel fairly safe.
I was thinking the same .. it is a scary time . I’m also thinking of those going through their chemo just now .
stay safe and well all you July ladies !
Hi Lovely July Ladies,
It is a scary time. Hope you are all ok. I am thinking of you.
If you want to rub Jamaican rum on your head you can try it 😁 I think we try anything and everything to get hair to grow back 😁😁 the red dot shampoo tip was passed down to us oct17 thread from the amazing beautiful mishy18 and the Jamaican black castor oil a young bloke in the wig shop who had used on his bald patch and was now sporting lush head of hair 😁 so 👍on him because it’s a tip I’ve passed on to the threads so 👍👍 enjoy your pamper tomorrow ❤️ 💕💕✨✨Shi xx
What a lovely post Shi. You are right everyone is a star. For second as I glanced on your reply I thought you were suggesting we got Jamaican Rum. I thought what a wonderful idea! Xx
Hair tips for helping it grow ❤️Extra dark Jamaican black castor oil rub on bonce and leave for upto 30 mins to 1 hour then wash with lush red dot shampoo bar called new (not sure if they still do it) but worked great 👍👍 Lucy lump everyones stars ✨✨✨ we all shine on each other and light the journey for each other and those yet to have the journey ✨✨✨ these threads are threads of stars ✨✨✨❤️💕💕✨✨Shi xx
Thank you so much Shi and Kaytee. Shi you are such a star. An amazing support to everyone on here and very very much appreciated. Kaytee I am so sorry to hear about your nails. Mine have stayed on so far but flake off in bits. My hair sounds a bit like yours. There are odd sticky up bits. I never got my head shaved before or during chemo so the odd bits are bits that didn't come out. The hair dresser will just make it all one length I think. I have not yet been brave enough to go out without a chemo scarf and I honestly can't wait. I was really lucky with the rads. I haven't really had any side effects at all. I may be making a wee film with the rads department for them to show other patients. If I do I will post a link. I have always wanted to be in a film. Wasn't planning for it to be one like this though! Anyway seems ages since we finished out chemo but actually only 5 months. We've all done just great! Xx
Great to hear you have finished your rads, hope you did not get too many side effects, I found my skin got worse after before it got better. And I am still a bit sore and itchy, had to call the help desk for advice today.
My fingernails are growing back after all coming off but are very weak. Unfortunately my toe nails have started to come away now too 😞
Glad your hair is long enough to go to hairdresser. Mine is not there yet although I did find that I had some sticking out bits today at work and initially I tried to get them to stick down, but then I was so pleased to have enough that there was tufty bits, I left it all sticking up! 🙂
All the best ladies xx
Lucy lump 😁😁😁👍👍👍👏👏👏👏😇💃🏻🕺🕺💃🏻💃🏻💃🏻Celebrate 🎉 yeyyyy well done ❤️❤️Hope your hair cut goes well nice for you to have a pamper ❤️❤️😘😘💕💕✨✨Shi xx
Hello Lovely Ladies,
Hope you are all doing well. I had my last radiotherapy today - hurrah! Bit scared (well actually a lot scared) of coronavirus but otherwise all good. Still some ongoing effects of chemo left like spilts in fingers and nails still brittle but getting there. Going to hairdresser tomorrow. My hair is growing back but it looks ridiculous so hopefully she can sort it out. Thinking of you all and sending hugs.
Yes, I have had split skin on my thumbs and index fingers from the chemo working through. My nails are still tender to touch ... loads of cuticle oil and moisturiser but it still splits . Also, anyone had rib pain from the radiotherapy ? Don’t make me 😂 it hurts !!
hello to all you lovely July 19-ers ... we’re still trying to get there aren’t we, whatever hurdles come our way.
Is anyone else having problems with skin splitting? I have small cuts on four of my fingers where skin has split. I have had a lot of these. I put on lots of moisturiser which helps them but then more appear. I am assuming it is one of the many left over bits from chemo. Hope you are all OK and staying warm in this wild weather. Xx
Yes I have nose bleeds too. Not as in pouring out but definitely blood in my nose most of the time. It must be due to chemo. I am not on tamoxifen. Only herceptin at the moment. Xx
you mentioned nose bleeds.. yes during my chemo i had quite a few nose bleeds. They would happen anytime... in the shower. Getting out of bed 🤷♀️
apparently it can make the nose membrane thinner and i stopped blowing my nose.
didnt have a good cry which i often felt like bcoz my nose would bleed again.
all ok now though. M
Hi Crochet-Helly, Kayteen and AWW,
I am on the same road as you. I started Tamoxifen back in November and my onco said the same to just wait and see. I had my first period 2 weeks later so they checked my hormone levels. They were over the roof, and I started to have the monthly injections for ovarian suppression in December. To be honest I don't feel any difference apart from having more intense hot flushes.
I am recently having nose bleed quite often. Literally I never had it before in my life. Does anyone have the same? Can it be the aftermath of chemo?
Take care ladies,
My Onco seemed to think Tamoxifen is the best if it suits you and you have no bleeding so hopefully he is correct. He said he they did a blood test now it would give false readings, ie suggest meonpause but then periods could return, waiting a few more months will allow our bodies to heal a bit more.
I'm happy without having any more changes right now, just wish I could find something to get rid of the night sweats!
I had a call from my Onco today and basically they have had a chat and decided to do the same as you! So leaving me on Tamoxifen for 3 months then see how things are looking and like you, to go back if get any bleeding.
Thanks for confirming what your onco team have told you, I do feal better knowing we are getting the same info!
All the best
Had my oncology check up today so thought I would update you...
Basically he said that as I am tolerating the tamoxifen then to carry on with that for now and they will see me in 6 months for a blood test to check my hormones levels - if I have been put in to menopause by the chemo then we can talk about moving onto an Aromatase Inhibitor.
If there is any gynaecological pain or bleeding before then I have to go back sooner as there is a slightly greater risk of womb cancers on tamoxifen.
Not really any the wiser now but at least there is a bit of a plan.
Hope you are all doing ok?
Love Helly xx
I dont have a passport so I have to go to the post office so they can take my picture over the counter! But there are worse things I know!
Your oncologist advice intrugues me, I'm so glad you mentioned it as it gives me time to do a bit of research and discuss with my Onco on monday, I will feedback any other perspectives they provide!
Thank you for replying. Sorry you are also having a tough week. It's funny how somethings can catch us of guard, I have to get my driving licence and passport renewed soon and hadn't thought about that! Try and think of it as a reminder of tough times but you have got through them x
I was having the same as you re Tamoxifen, but the oncologist explained that there are more choices and better more effective treatments that they can give to women who have had the menopause so there is less chance of recurrence.
I am 40 and definitely feeling older today but still here so got to think positive xx
Thanks louise and aww
I feel more positive this morning. Like you said,Aww, it is for the best.
Have you had your first injection yet? How r u getting on with it?
Hi Katy and Aww
Sorry your onco's are advising ovary supressing treatment, this whole process does feel like an assault on everything that makes us look and feel womanly. I had a few tears earlier ~ so silly but I have to renew my driving licence so now I will be stuck with a 10 year pic of my post chemo hair 🙈 not sure why this is bothering me so much but it is.
Im seeing my onco on mon, been on Tamoxifen for 2 months and side effects are no worse than the ones chemo caused ie no periods since July and hot flushes mostly at night. When I saw her last I asked what will happen about ovaries and she said we would wait and see (my tumour was ER+, PR+ and HER2-). Im going to be 40 in a couple of weeks and feel more like 60 at times.
Katy and Aww did they explain why you need the hormone supression as well as Tamoxifen? What are the extra benefits?
I hope you are feeling a little less sad today
Love Helly xx
I understand exactly how you feel, I actually cried when I saw my oncologist the last time and she was telling same thing you were told. It just makes one depressed having to deal with hot flushes, no menses at a young age but we just need to carry on being strong knowing all the treatments are for our own good.
I am sending you a big hug.
Oh Kaytee, I am so sorry. That's a really big thing for you to have to deal with. Sending you a big hug. Xx
I am feeling a bit down tonight. Been to my oncologist today and although there was no bad news as such, it wasn't what I was hoping to hear. I mean I didn't expect them to say all sorted get on with your life but there were no definets either way. They recommend starting a drug to stop my ovaries working which means early menopause:-( then they can give me more effective drugs. I want to have the best chance so this makes sense but for some reason this has really depressed me. I have been having hot flushes and no periods since chemo and obviously it's something us girls have to get through at some point in our life, but I am not ready!! 🙂
I know some of you will be in the same boat as me so sorry for having a moan
It is lovely to hear from you too. I am sorry you have not been feeling so good. I think it is totally understandable given this roller coaster we have all been on and which we are still on. I hope you have some better days soon and definitely going down to the gym is one of the best things you can do to help yourself feel less down. I haven't got Zolendronic acid yet but my oncologist did say I may get it in the future. I am definitely not getting perjeta though which I was not happy about - only Herceptin. I am not entirely sure why but she said there would be no evidence for it in my case. She then mentioned Kadcyla which might be available in March for primary breast cancer. I am willing to take anything I can get! It is a bit of a minefield though trying to make sense of it all. Had my radiotherapy planning meeting today. Thankfully it all went ok. Starting February 18th for 15 sessions. Will be SO pleased to get it over with. Hope everyone is Ok this evening. Think I might have a wee Baileys. Xx
So good to hear from you! 🙂
Bod, I am on targeted chemo till July, 18 cycles, same as you. I am not getting Zolendronic acid though 😕 My chemo doc said that in Korea they just don’t give it, they prevent osteoporosis in more natural ways. I am a bit unsure about that. My cousin flies an oncologist, I will ask her about this tomorrow.
Louise, good luck with radiation, it is a walk in the park compared to chemo. Saying this, for me it was draining emotionally. Probably going there every day after work was tiring as well, plus took 20-25min every time due to my bilateral BC and the port being in the way. I had a silicon based cream from my radio therapist, I will check the name of it after I get home. I also used Cetaphil and it helped a lot.
Yay for Baeliy’s , one of my fav. Silverpixie, I had two glasses of wine occasionally since Christmas, no problem after. Even my chemotherapy doc said that 1 a glass of wine won’t do any harm. 🙂
I had my first haircut a couple of weeks ago (I have a short hair style), it felt so good.
Ladies, does anyone has mood swings recently or feeling down more often? I am not sure if it is because of the hormone therapy, targeted chemo, being tired bcs of insomnia, or my body thinks that it can let go as the tough part of the treatment is over? Does anyone has something similar? If yes, how do you deal with it? I feel better when I go down to the gym to move a bit but is there anything else that could help?
Happy Lunar New Year ladies, the year of the rat will be much easier.
Yes , we went on a Mediterranean cruise 3 years ago for a special anniversary and had a wonderful time . Only tip I’d give is take clothes in 2 sizes and wear the smaller ones at the start of the cruise because you’ll definitely get bigger towards the end !!
We are hoping to book another one for next year once my OH has retired , only thing I’m wary of is the travel insurance now we’ve been through this shenanigans .
But do go and enjoy it .. we thought it was like a 6* hotel and wanted for nothing . Bliss!
Glad you are on the up now ... it’s been a blooming hard row to hoe though hasn’t it ?
Only cruise I have been on Kaytee was a mini cruise to Orkney and Shetland. Whilst it was awesome I hope you go somewhere hotter!
Good to hear from you and glad u have good poo! 😀🤣. It is funny how easily we can all discuss our bowel movements (or lack of during chemo) 🤣
I don't have a holiday to scotland booked this year, but provisionally booked for 2021!
Depending on test results etc am thinking about going on a cruise this year. Anyone been on one, any tips?
Best wishes to all
Hi Kaytee and all other Lovely July Ladies,
It is lovely to hear from you. Thank you for all the information and advice re radiotherapy. I will definitely be shopping for Aveeno cream next time I am in town. I am like you Kaytee re the make up in that I only wear it for special occasions (like friends weddings). I have no clue though what to do with it so I am looking forward to finding out.
I totally understand you feeling nervous about seeing the oncologist. A few weeks ago I got a phone call saying an appointment had been arranged for me to see mine the following week. Well I was in a panic wondering...why?...had they found something else wrong? etc etc. Turned out all she wanted was to see me again before radiotherapy so all was good. Will be thinking of you on Thursday. Let us know how you get on.
Today I am having a bit of a celebration. Here in Scotland you get a poo test through the post as a sort of present from the NHS for your 50th birthday and for every 2 years after that. I got mine last October but put off sending it in. Stupid I know but I felt I could only deal with one thing at a time. I eventually did it though last week and the results came back today. Poo was good - nothing to worry about but I was shaking opening the envelope just in case. Been smiling since then though and keep telling myself - Yay I have good poo! OH my word just realised how much time we spent discussing poo in a different context a few months ago. Not only is poo good we can actually do one now too. Oh dear it is getting late. I need to go to bed!
Kaytee hope you get another holiday up to Scotland this year. You need to come back to see the deer but this time feeling better.
Love to everyone, Louise Xx
Meant to say in my last post I went on the look good feel great session last week.
Make up is not usually my cup of tea, I am a special occasion only kind of girl but it was quite fun, got some good tips and was nice to chat with other ladies . Also came away with lovely big goody bag.
Lovely to hear from you all again.
hope everybody is doing well
I had a mastectomy but didn't get any kind of swelling I had drains in for nearly two weeks but once the drains came out I didn't get any further swelling.
hi Louise the radiotherapy is definitely a lot easier than chemotherapy it is a bit strange like helly said there's no dignity. in the unit I was on I had to get undressed in the room with the machine, occasionally they would give me a piece of paper to put over my self when I was getting on the machine but it was a bit pointless really as once i was actually on the machine i had to lie there and they covered my mastectomy side with a like gel sheet but my other boob was just left open and then they mark me up with a pen and most of the time those lines went straight down my nipple! so yeah definitely no dignity involved but you just have to get on with it. the actual radiotherapy takes only 5 minutes just getting lined up takes a long time.
I would definitely say to get some Aveeno cream and put that on quite regularly I didn't really get any redness until about a week after the end of treatment which was the 11th of December and even now there is still a red patch but it's not sore, although I do find my bras uncomfortable under my arm, where i now have an excess of skin 😞
I've been on to tamaxifen for nearly 2 months now so far I'm getting a lot of hot flashes which is not fun.
Got to see on oncologist on Thursday to discuss the next stage of treatment. I am finding myself quite nervous about it.
Best wishes to everyone x
Hi Helly, Bod and Silverpixie,
It is lovely to hear from you. Thank you so much for all your advice re radiotherapy. I will be particularly careful Helly re making sure my boob is dry. Having nipple skin peel off sounds so painful! Ouch! Silverpixie I also agree a few glasses of whatever can't be that bad. I discovered an unopened bottle of Bailey's in my kitchen a couple of weeks ago with a best before date of end February so I opened it straight away. I hope your got good results from your heart scan and that you can start your herceptin injections again soon. Bod I hope you are not getting any nasty side effects from the Zolendronic acid.
Hello to everyone else as well. We have all been through so much. We are all stars. So strange to think that this time last year we were not on this journey. We have all come so far. Sending hugs to you all. Xx
Hello Louise, Silver Pixie and Bod and all our other July buddies
I too miss the support you all provided, it made a huge difference to my ability to cope.
Louise, I had a seroma after my lumpectomy in June but it wasn't bothering me so the nurses were happy to let it heal on its own, I couldn't face them sticking a needle in to drain it! It probably took about 3 months to go away completely. Other ladies had this when they had their radiotherapy so I dont think its a big deal -but ask when you have your planning meeting.
When you go for your meeting/rads just wear an easy to move top, they will probably give you a 'dignity tunic' to wear, my hospital sent me home with it for the duration - but there is very little dignity about it! It always made me laugh as they nurses try so hard to be respectful and preserve your dignity but you still have to lie on a hard bed with your boobs on full display while they line you up, and then they cover your 'good' boob back over while you get blasted! You get used to the process so quickly, compared to chemo it is a doddle. In case no one has mentioned you will get 3 teeny tiny tattoos (I call them my tittoo's) I was most worried about this as I dont like needles but when the nurse did them I didn't feel a thing and I can barely see them.
I was not going to bother with crop tops being bigger busted but after a few days the boob does get red and a little swollen so I bought some crop tops from M and S, they are sold in packs of 2 and I found that wearing 2 together gave good support so am still wearing them now (my rads finished Dec 4th).
Get yourself some Simple shower gel for washing and some Aveeno cream to lather on after rads and throughout the day. If you want to use aloe vera gel its really only best for cooling down, and you must let it fully dry - I did not know this and ended up having some nipple skin peeled off by my pyjama top!
Silverpixie, I do hope you get good results for your heart scan. I didnt drink before BC so it didn't cause mine, I would say if you enjoy a few glasses of wine here or there you go for it, life is too short!
Bod, good luck with your continued targetted therapy and zolendronic acid, you are a star.
My hair is returning, i have used my husbands haird clippers on the sides a couple of times just to even it out as they are growing faster than the top! I love having eyelashes again and my eyebrows seem to be coming back lighter. I ditched the scarves and never bothered with the wig, and everyone complements my hair, weirdly most people want to stroke it - which is strange but I go with it!!
Started Tamoxifen back in Dec, 2 months down, another 9 years and 10 months to go, so far so good, no new side effects to report - still having the hot flushes at night from the chemo tho which is the most annoying part.
Im just trying to lose the chemo 'padding' I gained from all the chocolate eating during treatment - have lost about 5lbs, need to lose quite a few more though to get back to my pre-treatment weight.
Stay strong ladies, you are all doing great and I think about you often
Love Helly xx
I also had a huge swelling on my wound site One week after surgery. It was a seroma hard and squelchy. That mostly gone now but I still have three hard lumps under the skin. Looks like a deformed boob but no one seems worried about it. They say it will go on its own. I just wish it would hurry up.
Im also on Zolendronic acid every 6 months for 3 years. However I’m still having targeted therapy for her2 until August. 18 in total.
Hope all goes well.
Best wishes to everyone x
yes I have missed our group chats and reassurances too . No I didn’t have haematoma after surgery but sympathise with your concern .
I've ha my radiotherapy now and abandoned bras in favour of camisole tops and loose fitting blouse shirty things . Have had my Herceptin delayed because of heart probs but just had another heart scan do I hope I can restart it soon plus getting the Zolendronic acid stuff too . I have to start taking letrozole too but am so hoping not to deal with any more yuck side effects .
my hair is growing back too . Straight and tufty at the sides but like a Brillo pad at the front - not for release to the public just yet ! Eyebrows And eyelashes are coming back too -yay!
It was my birthday yesterday so had a bit of a celebration with a couple glasses of wine .. anyone else wary of alcohol now we’ve experienced the dreaded C ?
woukd be interested in your thoughts
Hi Lovely July 2019 Ladies,
Hope you are all doing well. I miss you! I just wondered if I could ask did any of you have a haematoma after your ops? I have a massive lump left over from my second operation on 9 December and it doesn't seem to be going anywhere fast or actually going anywhere at all. I am assuming this is a haematoma. Both my surgeon and oncologist have seen it and don't seem that bothered but I have a planning meeting for my radiotherapy on Wednesday next week and I am worried this will delay it when I just want to get on with it. Did anyone else have this? Also re planning meeting for radiotherapy - am I supposed to wear anything specific or do they give you a gown? I read somewhere about crop tops but can't find one to fit. To be fair I haven't actually looked that hard but any advice on this would be great.
Chemo seems so far away now. Taste buds fully back to normal - yay! Hair doing not too badly although I haven't been brave enough to let anyone see it yet. I have set myself a date of going scarf free by 18 February when I am booked on a Looking Good Feeling Better Course. Eye brows just about visible and I have some eye lashes too so all moving in the right direction I think.
Ooo my oncologist has mentioned Kadcyla may be licensed for use with primary Her2+ BC in March and that I may get this. Also Zolendronic acid to reduce risk of recurrence in bones. I am will be taking anything I can get!
Hope you are all Ok.
Love Louise Xx
I completely agree with lucylump and silverpixie, it's really helped me to be able to read your stories and start the journey together.
Wish you all a merry christmas and better 2020 xx
Hi Lucylump and all you lovely July ladies,
Happy Christmas to you too and I echo Lucy’s sentiments, when I say that having you there, has made such a difference to this journey, that none of us wanted to be on . It’s been so often reassuring , and sometimes humorous 😂 to have you there at the end of a keyboard !
let’s hope that next year is better for us!
love and hugs
Hi Lovely Ladies, just wanted to wish you all a Happy Christmastime. Christmas seemed such a long way away when we all started this. Thank you all for being there too. It has made the world of difference having you all with me on this journey. Sending love and hugs to you all. Xx