Breast Cancer Now Forum

Hi Naomi, I got this too when I was becoming run down. The mouthwash is horrible but worth persevering with. Maybe water it down a bit? i also used a non alcohol mint mouthwash which was soothing. You could also suck ice cubes. Bonjela could numb particularly sore areas.  Avoid spicy, salty foods.  I also use a child’s toothbrush because it’s a lot softer .   Hope this helps xxx ... View more

Good luck today Naomi 🍀 . I hope your temp has settled down and you’re able to go ahead with your next round of chemo xxxx ... View more

Hi, I’m back and I survived Christmas!  A few ups and downs with you guys I see. ☹️ I’ve managed to avoid hospital but think having my final chemo on 23/12 followed by steroids got me through .  we had my in-laws up to ale over the kitchen and Boxing Day everyone had the s***s quite bad apart from me and the kids....result!! Although my chemo squits are due to start any day now 🙄 . Everyone went home on 27th and I’ve been drained since. Afternoon on the sofa planned.  Appts from hospital seem to be coming thick and fast. 7 appts in January which includes surgery on 23/1.   Naomi, I also gave a CT booked for a lung nodule. I wasn’t even told about it, I just saw it on the computer with the onco nurse. She said if it was anything to worry about I would have been told however the surgeon is following it up... I haven’t told the family about it though. Don’t think they need to know until after the ct. saves me talking about it to them.    Good to put a face to you Naomi, thank you for posting your pic ☺️.   As i’m having radiotherapy post surgery I’ll not be having reconstruction During surgery . Can’t remember if I mentioned I’ve joined ‘flat friends’ on Facebook for women living without reconstruction. There’s a public and private group if you want to search for it. Making me think in a whole new way of what is ahead. Good and bad xxx    Keep fighting ladies, we will soon be looking back at this time and will be amazed and proud at how well we’ve done. 😘 ... View more

Ooh mini mad, I hope my hair comes back thicker and straight! I had very annoying fine wavy/wiry hair. It was an effort to do everyday hence I didn’t bother most days. I remember when I first got my wig and I was getting so many compliments from people in the playground , not in the know, about how lovely my hair was looking, a lovely friend brazenly commented, “shows how **bleep** your hair looked most of the time before with all theses compliments your getting”. 😂 😂 I haven’t had surgery yet, booked in for 23/1 for R mastectomy and anc. I was diagnosed DCIS invasive Her2+.  Sam, I just never expected so many spots, its like they multiply overnight! I actually sell Tropic skincare and a customer knocked on my door on Monday to place an order because she hadn’t seen me around. I don’t know her that well and I thought it was a delivery guy. I looked my absolute worst. I was in a grubby dressing gown, a beanie to cover my Kojak head and full on spots and puffy eyes. Her face was a picture 😂 😱   Beryl, yay! Congrats on your last chemo, so pleased your bloods have been playing ball and you can now look forward to Christmas. I’m hoping the steroid highs will get me through Christmas. All being well tomorrow with my bloods I should be having my last chemo on Monday. In laws are up for Christmas and will do all the cooking allowing me to ‘relax’.  Feeling energetic at the mo so managing to get lots of Christmassy stuff done. Mainly hunting round the house for all the presents I’ve bought then hidden 😂 . I’ve been on a bit of a wrapathon too whilst drinking Baileys. Bit more shopping and house cleaning to do over the weekend and then tools down on Monday for everyone else to take over!    Have a lovely Christmas ladies, fingers crossed we all feel good enough to get through it all ok! 😘 😘 ... View more

Thanks mini mad but feeling quite s**t at this moment but only one more to go 😊 🤞 First picture was taken pre diagnosis so spring time, second picture two weeks after first chemo when I shaved my head. Third pic was last month and the fourth with full on spots last week. Hoping they’ll clear off once chemo is out of my system. X ... View more

I’ve been taking photos of my ‘journey’. I understand why I’ve been hibernating from life....for now.   ... View more

Hi Berylperil, sorry to here you’ve been delayed. I totally get your tears. Any deviation from the timetable feels like an emotional let down however as much as we want this stage of treatment done and dusted we have to be well enough to manage what it throws at us.  The last thing you need us a hospital admission if it went ahead 😱 My final chemo is booked for Monday with blood test this Friday . I’m full of cold and have been for over a week, dripping watery snot everywhere, to the absolute disgust of my kids 😂 .  Unless I stick tissues permanently up my nose I can’t get to the drips quick enough 😂 😬 Hoping this doesn’t affect Monday’s final treatment 🤞   Has anyone else’s skin gone to complete pot. I sell natural skincare products and my skin has always been ok, as in no spots or particular problems. I am now covered in spots and my eyes are so puffy... I look bloody delightful!!   ... View more

Hi Bethybluesky, The construction malarkey is quite a journey in its own right!  I have 10 year old twins so also quite self sufficient but also very demanding too. I’ve managed to keep home life pretty much the same for them, but put myself on strike this weekend and let husband take the load! Xx ... View more

Hi Naomi, hope you’re feeling ok. Your weekend sounds pretty s**t!  I’ve argued with my husband too and it’s bloody awful although I must say we need to be cut a bit of slack. Unless you’re actually going through what we are no one will fully understand the emotional journey and we all cope in different ways.  My chemo nurse did tell me that things do get more emotional in the latter part of chemo and we can feel more tearful.  Being told to ‘toughen up’ is downright mean. Don’t ever feel guilty for trying to get through this, we should be putting ourselves first to help us beat this awful disease.   Sending positive vibes your way Naomi 😘 😘 ... View more

Hi! Bethbluesky: what month was your surgery and how have you healed, did the seroma complicate things?  I must admit I don’t want to be kicked out of hospital as a day case after my op. I just won’t be able to rest properly at home with my crazy kids!  I've just had to google your licap procedure. Are you pleased with it?  I initially presumed I would be fine for a reconstruction during mastectomy. The surgeon told me I don’t have enough of my own tissue(back and belly) so would need an implant. However as I’ll now need rads it’s not advisable to have an implant before this due to possible complications. Thanks for highlighting arm exercises as a must do although I am really anxious at the prospect of developing lymphodema ☹️ .  Berilperil: Lots of good questions for your surgeon. They must base surgery on MRI results as well as chemo response. I was always having a radical mastectomy regardless off response to treatment so, ‘thankfully’, I’ve not had to consider other surgical options.  I went in quite unprepared as they only rang me about the appt 2 days before (they obvs forgot to book me in!).  I met with the BCN afterwards and I’m seeing her again early Jan . Due to having rads I know it’s best to have the op minus any thoughts of reconstruction at this point. I’m happy to accept that for now. I just want it all gone now with clear margins. I have a node that needs removing from my chest wall... not the easiest to get to as I found when they tried to put a marker clip in 😫 .  I think this next phase has hit me more than I thought and the reality of this impacting on my life  so much has hit hard. When anyone asks ‘how’s it going?’ be it friends or medical professionals I seem to give the same response.  I say life at home is ticking along as ‘normal’ but I have hibernated from my social life. I think this hibernating is taking effect on me know and I’m fed up 😢 .  Meeting a friend for a cuppa in a bit though, she’s got boyfriend trouble so I’ll get the low down which will distract me from my own woes 😉   xx    ... View more

Evening all,    hope we're all getting through a relaxing and hopefully pain free Sunday night (with the help of meds for me). A week into 5 th chemo with final one booked for 23/12.   Met the surgeon on Friday and have been booked in for 23/1. Next phase has suddenly become a reality. I’ve been told I’ll probably need rads too ( I’m thinking this is due to my ‘partial’ response  to treatment) Briefly met BCN and discussed the ‘what next’ once the op is over. Not having a recon as I need rads so I’ve joined ‘Flat Friends’ Facebook group. Looking at options as a uniboober. Has anyone had their surgery yet or are we all neo adjuvants? X ... View more

Morning!  hope you’re feeling ok this morning Naomi 🙂 Good news on your MRI Sam! Like you I had shrinkage but stayed dense 🤪. I’ve got my 2nd MRI on Monday so 🤞 . Did you have 3 EC’s? I only had 2 and due to ‘minimal response’ I was moved onto pertuzemab, tratuzemab and docetaxil . They have said they are expecting a better response this time 😬 . I bloody hope so , I have felt ropier this round. still managing day to day stuff on the whole(just cleaned bathroom 🙌 ) but just not felt good. Coming up to final week and birthday weekend so hoping I’ll feel like a few gins and finally be able to taste what I’m eating. i might as well save money and rather than eat food eat the packaging it comes in... it all tastes like cardboard .   Onwards and upwards it’s nearly the weekend 😊 ... View more

Hello from a very sunny Leeds ☀️ ☀️ ☀️ Glad to hear you are through the worst this cycle Sam. Bike ride sounds awesome, I love a bit of mud and manure is good for roses? Surely it’s good for us too 😉 . I’m just going through the mill 😩 and feeling 😖 😴 🤧 😕 .  Just had to do an emergency dash to the loo in Sainsbury’s.... thank the lord there was no queue 😳 💩 The kids are just not getting it ( they are only 10) however I think they are definitely of an age were empathy should have kicked in. Well, I think it might have after my explosion on Saturday! They were being little s*!**s and I lost the plot, with my husband too. Expletives galore 😬 🤬!   I have given no apologies for my outburst and nor do I intend too.  It’s also my big fat 50 on Saturday ☹️ . I’m not really bothered about being 50 I’m more bothered that all my plans have now changed. Weekend to Bruges cancelled, marathon I was doing with friends in Spain cancelled .  I haven’t wanted any fuss but different groups of friends are arranging meet ups for lunches, afternoon tea, theatre visit so it’s not all doom and gloom.  I think if anything, this **bleep**ty cancer has highlighted how things at home aren’t that rosy 😔 . sorry for the self indulgent post .  On a  positive note I got a critical illness payout which I didn’t even think I was entitled too!  kate xx 😘   ... View more

Hi Berylperil, pleased you’re feeling better generally. I hate the disappearance of taste and that awful mouth feeling. It’s just a waste of food because it has no taste.   No suggestions I’m afraid, I’ve had no soreness in my last few rounds thankfully. I do tend to eat boiled sweets to take away the foul, furry taste in my mouth.  Do you find it clears up into week 3?  xxx ... View more

Hi Naomi, sounds like you need to talk it through with your oncologist some more. Keep us updated xx ... View more

@Naomi40 wrote: Hi Everyone,    I hope everyone is doing okay?    I unfortunately have hit a bit of a low. I feel like I’m just doing what needs to be done without any real feelings.  I have finished my 3 cycles of fec and have a scan on Thursday to see if my tumours have responded. I also have to see a nurse for picc line insertion even though I have said no to having that as that’s not what I discussed with my oncologist.  I didn’t do well with the last 2 cycles of fec and I still have pain in my arm from the last 2 cycles and I felt more unwell with the 3rd cycle.  My oncologist now wants me to have weekly chemotherapy instead of Docetaxel because of how my body reacted with fec. I’m so tired of being stuck full of needles and I’m so fed up of it all right now.  I’m trying to be brave and strong but sometimes I’m just so fed up with it all. Hi Naomi,   fingers crossed with your scan on Thursday 🤞 Why do you not want a picc line? It might be more straightforward if you have to have weekly chemo, it could take away the stress of all the injections. you are really going through the mill with this treatment Naomi and it’s such a shame you have to try and feel brave when you shouldn’t have to if you’re feeling totally crap!  At the start of this journey the Macmillan nurse spoke to me about how cancer treatment can affect people differently and our moods too. Have you spoken to your nurse/ doctor about how low this is making you feel? They should be able to give you something to help or contact Macmillan about a counselling session. It sounds like you’re not really getting the time with the medical staff for them to get how you feel. Xxxx ... View more

@berylperil wrote: Hi September gang,  Feels like we're definitely in the trenches now. I was very pleased to get round 4 in last Thursday, but after the high has come the low.  Sunday passed in a haze of exhaustion. It was enough to have made it from bed to sofa and back again. Making myself eat and drink, but don't really want to, but know I have to.    Today I feel a tad better, I think this comes from accepting that I will need to go through this  phase and there will  better days ahead. I cried alot in cycle 3, I now know how gentle I need to be with myself and others.  There is a pace and rhythm to the process my body needs to go through and I have been fighting it. This has come in the form of needing to achieve something everyday, and then feeling that I am useless (even saying I am pointless), if I can't do it. I am being a bit rubbish at being wife/mother/friend/daughter/colleague, I have sort of lost my identity in these roles, I am for this short while reduced from who I was. I have even said I am failing at this chemo lark as others seem to carry on and sail through, so why can't I? But for now this is me,  I am  not achieving  what I thought was important, my expectations on myself have realigned.  I am not keeping my chin up or carrying on to make sure life seems normal, because its absolutely not. Today I am still exhausted but I got up and had breakfast and  cleaned my teeth, and then crawled back under my duvet.  I have  got my lovely dog for company,  and I have pulled favours for the school run. I don't need to achieve anything more than just be, and tomorrow is another day. X How are you feeling? Hope today is a good day xxxx ... View more

Hi everyone,   how are you all? Just catching up and sensing we are all in the thick of it now. I’m currently having round 4 as I write. Last patient here! i had two rounds of EC and mri showed a minimal response to the tumour so they cancelled my 3rd EC and I’m now having pertuzumab, trastuzumab and docetaxel. Last 3 weeks have gone quite fast tbh. I did have episodes of tiredness and achey bones and that bloody awful taste in my mouth 😭   I enjoyed a few gins this last weekend though as I felt ‘normal’!   when I met with my chemo nurse on Friday she told me to expect to feel emotional and tearful at times. It seems to happen more so on rounds 4 and 5.  so if you haven’t been told this take care and come on here for some hugs xxx  ... View more

Naomi, I was given two lots of anti sickness this time as well as three lots of painkillers(paracetamol, brufen, codeine).   Ive taken a few painkillers and a couple of anti sickness but nausea hasn’t really been a problem so far. Abdo cramps when I need the loo are probably the worst thing and I’ve had this with all 3 chemo’s. Happened in Blackpool today and I just had to dash into a hotel, obviously looking desperate for the loo 😳 💩 !  Just explain and I’m sure you’ll be given enough to help should you need them.   Blackpool was fun, first time for the kids but I’m knackered now. So pleased we just drove from Leeds and didn’t stay over. Back home all cosy in my pj’s with a cuppa tea 😊 ... View more