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Stephie82
Member
since
09-06-2020
35
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28
Hugs
16-08-2020
06:05
1 Hug
Hi Maire, Thanks, that's so helpful. I'm 38 so I think I've probably missed the boat although my oncologist said park it and reconsider in 3 or 4 years. I feel that's too late but I'm so lucky to have my little boy and will just be grateful to be back to being normal again. But it's still lovely to hear though that your sister didn't go into permanent menopause with treatment. I know chemo can sometimes trigger early menopause but not always.. Fab news! I'll be on letrozole in the future and I thought that would trigger menopause (which would just be an extra kick when down lol!) but I've done a bit of research and it doesn't if given zanodax I believe so there is hope.. Think I'm still slightly in shock from diagnosis and menopause straight away on top would just be a bit too much to get my head around. It's so nice to look at the positives. How's everyone doing today? I'm day 6 and I'm fine except not sleeping great (steroids I guess). And things are starting to taste strange now! Water in my lovely new water bottle tastes awful lol! Think I read to try adding lemon so I'll give that a whirl. I've also got a touch of chemo brain.. can't think of words sometimes.. My son laughs at my random words lol. Hope everyone's ok today 🙂 xx
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15-08-2020
07:07
1 Hug
Hi Maire Just to say thanks for this positive post! We were trying for our second when I found my lump in may. I chose not to do fertility treatment due to being oestrogen positive. I'll be on letrozole later on. Did your sister come off her tamoxifen/letrozole to conceive or maybe she wasn't er+ so wasn't on hormone tabs. So wonderful to hear she's so many years post BC! .. Yay for positive stories.. Plus treatments come on even more lately! 🙂 x
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15-08-2020
06:40
1 Hug
Hi everyone, I'm still getting the hang of this board and messages, will catch up! .. Im day 4 post 1st chemo and felt fine up until now but now feeling yucky today. Big hugs to everyone.. We'll get through this. I wonder if in the future we could set up a WhatsApp group or a Facebook group? That may be easier to follow and keep up with each other? Just a thought. Steph x
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12-08-2020
07:10
2 Hugs
Hi MB, I just wanted to say I also backed out last minute of the egg harvesting (as involved oestrogen). I start my first chemo today and it's tough isn't it knowing chemo is possibly damaging fertility. Big hugs to you and I hope everyone else is doing ok x
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09-08-2020
10:05
2 Hugs
Hi Maire, sorry I've not logged on here for a while, it's been busy with work and my little one but I've taken next week as leave and obviously after that I'll be on sick leave when I need it. How are you feeling after your injection Maire? Hope you're doing okay today? And Kat I hope the cold cap works for you.. fingers crossed.. I've not even decided if I'll give it a go yet.. I wasn't going to but apparently even if it doesn't work properly it can help with regrowth coming through more quickly in the future so I guess it could be worth trying. I've tried on some hygge bands I bought but they dont suit me.. I look ridiculous (my son asked if I was going swimming?! ha ha ha! It did make me laugh (he's only 8).. I think I need to invest in some hats! I'm glad we're going into winter! I hope everyone else on here is also doing okay today? Big hugs to everyone and we'll get through this together 🙂 xx
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09-08-2020
09:51
2 Hugs
Hi Amy, I start my chemo on the 12th, so the day before you. I need to catch up on all the messages on here but just thought I'd say hi. I've been told that the main thing is to drink drink drink drink to flush it out. They say we'll feel generally crap but we shouldn't feel so ill we cant get out of bed etc. General crappiness sounds doable I think and we'll all get through it together. Obviously they'll be days when we dont feel crappy too so that's good. I'm having 4 cycles of EC then 4 of Pacs. I'm having it 2 weekly x
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04-08-2020
04:21
1 Hug
Hi Maire, I'm sorry to hear you've had issues post masectamy. I hope they can sort it quickly. Did you speak to them today about it? I hope your heart scan went okay today and good luck with your pre chemo apt on Thursday. Fingers crossed you can start your chemo as planned. x
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04-08-2020
04:12
Hi Kat, Yep chemo feels like the last hurdle and although I'm nervous, I just want to get on with it now! Thursday isn't long for you to wait! And I'm not far behind you, I start next Weds. There are so many apts aren't there! I've got my blood test and ECG tomorrow, covid test saturday and then nurse apt and piic line on Monday (I hope that doesn't hurt). I'm not sure if its under any anaesthetic or not.. I need to ask. Then I start chemo next weds. I'm only having an ECG not an echo scan but I'd prefer the echo as it's more detailed. I'm worried what chemo does to the heart so wanted a proper check but he said I'm too young at 38 to have an echo?! Im confused though as most people seem to have an echo? Never mind, I'll just have to hope my heart can cope! I'm sure it will but I'm having 2 weekly cycles which is going to be a little tough I think! But on the plus side I'll finish sooner I guess! Are you having EC chemo first? Like you, I'm looking forward to Xmas and being all finished! Yay! I think my chemo will finish mid / end Nov if I manage the two weekly cycles but I might go to three weekly cycles if its too much. I've never looked forward to Christmas so much since I was a kid! Ha ha! xx
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03-08-2020
05:35
2 Hugs
Hi everyone, I'm Steph and I start chemo next Weds 12th so I thought I'd join you lovely ladies 🙂 I had my masecatmy a few weeks ago and recovered really well. I was diagnosed with grade 2 lobular BC in May with all 34 of my lymphs involved which seems rare? 😞 and quite worrying in terms of future spread / secondary etc? However they think they got clear margins which is good and a PET-CT scan post op was all clear so I'm hoping chemo is just to mop up any little naughty stray cells! Im 38 and have a little boy who's 7 yrs old. I live down on the sunny South coast. I hope everyone's doing ok. I've got my pic line apt next Monday (hoping it's not going to hurt.. Im so squeamish!) Then Weds I start 4 cycles of EC chemo. Im having it in 2 weekly cycles. Is anyone else having 2 weekly cycles? Then I've got 4 weeks of Paclitaxel chemo. X
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02-07-2020
01:48
Hi Katrina Thanks so much for your reply! Im so pleased it all went so well foe you.. And so quick too! I feel calmer for hearing its not as bad as my mind imagines and only needing paracetamol is amazing. It sounds like you're doing really well and i hope you continue to recover well 🙂 xx
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02-07-2020
07:46
Hi Annie Thank yoy for your message, that's really good to hear.. I really hope I feel better after the op. I really hate all the build up. That's amazing you feel less anxious this time. Im so sorry to hear its back again though.. Or is it a different type? That's so unfair. May I ask if you were on tamoxifen as I understand that's supposed to keep it away. Recurance or secondary cancer is really worrying me at the mo. As you say though I shouldn't look too far ahead.. I know that doesn't help me! Have you gor your op date yet? Steph x
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01-07-2020
05:13
Hi Katrina Im not sure my previous message sent.. The messaging on here seems hit and miss but just wanted to say i hope today has gone okay for you. Big hugs Steph x
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30-06-2020
09:10
Hi Maire, Thanks for your message. The drains are partly what I'm dreading, I'm so squeamish so I'm not looking forward to all that sloshing around! And what a nightmare that yours all leaked, thanks for the heads up. I'll not panic if it happens but I'm dreading it all really. It sounds like overall you're recovering well though? It's great that you managed a brisk walk. How are you doing today? My op is getting closer and closer (Friday) and I tell myself it's all fine and I'm calm but I also feel very anxious. The nurse said its all routine to the surgeons and that its rare for anything to go wrong in surgery so why am I so petrified. I've never had a general anaesthetic or an op before. My boobs are quite large so I'm going to be incredibly lopsided 😞 but at least the cancer will be gone I guess. How did you get your head around it all or did you not over think it and just get on with it? No idea how I'll cope when I see I have no boob, just a scar Steph x
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29-06-2020
08:56
Hi Marie Thank you for your reply and all the info. Sorry I took so long to reply. How are you doing now? That's amazing you didn't even take any pain killers at all? Didn't the pain killlers and anaesthetic wear off leaving you in pain? It's so reassuring - I guess the surgeon neatly stitches it up and it just heals. Sorry to hear about the seroma, I hope that heals up. Did you have an auzilla clearance as well as masectamy? Ha ha about the cooking! I hope you've still not said anything?? Hope you're doing well with your recovery Steph xx
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29-06-2020
08:40
Hi Katrina, That's great that they barely found that any of it was invasive..that's really positive. Mine is called invasive lobular BC although they said not to read into the word invasive. It has spread to at least one of my lymphs so they're removing all of them. Apparently that's quite common and it's still treatable so that's great. Nope I've not got any history of breast cancer in my family so it was out of the blue. I looked into it and being overweight and alcohol can increase risks (I'm a size 16 and always trying to lose weight!) I drank way too much in my 20's and even in my 30's we probably drink over the 14 recommended units, well did, I don't now and I've lost half a stone doing lots of walking! I think you're right about the masectamy not being such a big op without the reconstruction being done at the same time. I think it's a pretty standard op for the consultants although obviously it's a big deal for us. I'm also nervous about chemo but trying not to think of it until they say after the op what I need. I feel the same as you, I just want it to be removed and got rid of with the masectamy. Are you all packed and ready for tomorrow? Are you staying in one night? Steph x
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25-06-2020
11:54
Hi Evie Thanks for your reply, that's really helpful and positive. I'm glad you've been able to enjoy your tennis again. I really hope that's just during recovery that the warm water could cause swelling.. hopefully that's not a life long thing?! I've emailed the lymphodemia society so I'll see if they reply. Hopefully a BC nurse will reply on here too. I can cope with things being off limits for the short term but long term/ permanent is really hard to accept. I guess I just need to be grateful for being alive though
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25-06-2020
10:23
2 Hugs
Hello, I'm sorry if this seems like a really trivial post but it directly relates to my emotional well being which is in tatters at the moment. I've got a right sided masectamy and full auxilla clearance on 3rd July and I will then find out 2 weeks later if I need chemo (they said 95% chance I will) followed by radiotherapy and they said it'll be 6 months treatment total... it all sounds like hell but I'm trying to be positive. One thing that was keeping me going was saying its 'just' 6 months of my life and by Xmas I'll be back to normal (if I'm lucky enough to be cured which I have to believe I am) (stage 2 lobular breast cancer which has spread to lymphs). My issue is that since lockdown like everyone else I've not been able to go to my gym which has a pool, hot tub, sauna and steam room. I used to LIVE for my day off from work for some work and child free me time. I've been telling myself in 6 months I'll be back there but some people on a facebook group I'm on say you can't do these things after masectamy/ lymph clearance? Is that correct? obviously you need to heal for several weeks etc and obviously not during radiotherapy but once all healed and better can I do these things ever again? Also, if they tell me after masectamy that I do need chemo then I was going to treat myself to hiring a hot tub for my garden!! I've been through so much and thought sod it! I've heard that hot baths etc help during chemo when your bones are painfully aching? If its a private hot tub with no one else in it and the water is clean and chlorinated is it ok to use during chemo? How long after masectamy and lymph clearance can I use the hot tub? I know it depends on each person but I'm hoping once all healed, after a month or so I can use the hot tub? Sorry if this seems petty but its the ONLY thing I have to look forward to in my life. I cant go out anywhere! cant get my hair cut, my nails done etc to cheer me up as I'm isolating pre op. I cant go on days out, holiday or see friends and family and I was sooo looking forward to this but now I'm worried I can't even do this?? Thank you so much for reading! Steph x
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23-06-2020
11:40
Hi Becci Sorry to hear everything you're going through.. it's so tough isn't it. I know exactly how it feels to wait for results, that was the worst time for me.. I was in shock with the diagnosis and literally petrified with the scans but it does get much easier after you have your results and a treatment plan in place. Now I have my plan in place I feel a much less stressed. I've got my masectamy on the 3rd and then probably chemo and radiotherapy. 6 months in total of treatment which seems a long time doesn't it but I found out on 13th May and that was well over a month ago so time will go quickly. Once you have all your results back and a plan in place you will feel better. Just remember these days the science and treatment is amazing and we will get through this. We can all support each other 🙂 Lots of people have said to me dont think about the whole big picture just literally take it each day as it's much more manageable. As for the cold cap I assumed it was an option but I've not asked my hospital. However I've decided not to bother with it as I dont want to be in hospital longer than I need to and also I've not had a hair cut since Feb(!) so it's not looking it's best in any event ha ha! I think with hair loss it can make people look ill but I've told myself the hair loss is simply the chemo which is making me better. If you see what I mean - its not the cancer making us lose our hair. I think you're absolutely right there are some gorgeous head scarves etc out there so between that, wigs and summer hats we will be fine 🙂 Apparently hair grows back thicker and more healthy looking after chemo! No idea why that is but this time next year we'll have gorgeous hair! I understand how you feel about being alone in all this. Friends and family can be supportive but they can't really understand how we feel so it's lovely that we can chat to each other. We'll come out the other side together 🙂 Steph xx
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19-06-2020
02:33
Hiya, my pre-op telephone apt was mostly asking me my whole medical history and they also booked me in to go for a heart ECG and a blood test (to check blood group). I went the following day for those tests. They also suggested a few things to bring to the hospital. They said to bring slippers and a book and to leave all jewellery etc at home. They also gave me a number to ring for a covid test which will be 48 hours before my apt. They said no alcohol 48 hours before op. I think that was it! They used to do the pre-op all together at the hospital but with covid they try to reduce how much time you're in hospital so the medical questionnaire is done over the phone now. I really hope your op date is sooner than 6 months - why did they say 6 months? x
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19-06-2020
01:51
2 Hugs
Hi Flamingo It's so nice to hear from you. I'm so sorry to hear you've got to go through all this and for a second time. I often feel really positive and that I can get through all this but I really worry I'll get through it and it comes back.. it's so unfair. I don't understand how it all works and why it comes back but it really worries me. I really hope this is the last time for you, now they've taken out all the lymph nodes hopefully it can't come back again? I'm having all mine removed too as well as a full masectamy so I hope it doesn't come back. Did you recover okay from having all your lymphs out? I know what you mean about talking to people going through a similar thing. It's great you have lots of support and my partner and friends are great too but it's just not the same. Also, you're so young too. It would be lovely to stay in touch and support each other 🙂 As for hair loss and chemo that's so true about it being summer. I guess in winter it's a little easier with having hats on etc. I had looked into head scarfs and some are really pretty and hopefully very light material so I think that's what I'll go for. There's some lovely ones online. Are you going to try using a cold cap to keep your hair or are you trying it? I don't think I'm going to although I know some people do and it works for them. Steph x
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