@alig1961 ouch ouch… I’ve had a bit of sore lips/mouth but any sort of lipbalm has soothed it a bit… hope the paw paw works. But yes, cancer is bloody expensive isn’t it? Wigs, hats, scarves, polybalm, CAKE !!! We should get extra vouchers to use on anything we feel like!!!
I often have night sweats too… I actually wake up thinking I’ve wet the bed… it’s horrible but a big fan and the coolest clothes I can wear help a bit. All these symptoms… it just keeps on giving and giving
@kaydee82 wonky nipples!!! Was this after a lumpectomy? I bought the asda swimming costumes and they worked brilliantly with my aqua boob but not sure if they would help with wonky nipples as I only have one left now, sigh…
@pat and @bettyb24 LOVE the pics… sooooo true. Why should we get anything done? I am planning a day infront of the tv, ignoring my family and the chaos of the house!
@donna_51 Yes the wonky is after lumpectomy. They didn’t get it all so had the pax and next is mastectomy and reconstruction late September/early October ( assuming I’m brave enough) so nipple won’t be with me long. God knows what I’ll end up with by the time they’ve finished pulling me about. Will check out Asda swimmers, thank you
Wanted to add another experience. I had two sessions of docetaxil with cold cap. My hair was shedding and thinning around days 18-24 then slowed down. Session 3 though, I really was in two kinds as I like the look of the scarves, had a wig on order and am at a stage where I just want to be as comfortable as possible. Had pretty awful side effects after 1 and 2. Anyway, others convinced me to try to persist with the cap, maybe because they felt horrified about me losing my hair . I tried it for an hour and had such an awful headache making me feel sick that I decided to ditch it!! So if there is anyone else out there who did the same, I want you to know that you are not alone. I felt like a bit of a failure as everyone talks about cancer warriors and here I was dropping something due to a headache. But I’m trying to focus on embracing a new image - slimmer (eating is awful for me), cool wigs, beautiful colourful scarves.
Thanks @bettyb24 … I’m going to have a long think about reconstruction next year as it’s just tooooo much to take in right now. I will definitely get a nipple tattoo though if I do go down this route! Like you @kaydee82 I’m hoping I’ll be brave enough to go through something else but I am going to take my time to think about it… no rush.
@marge1 well done for doing what’s right for you. DO NOT feel like a failure!! This process is hard enough without the whole warrior/fighter crap that others push onto us. You keep going and love embracing that new image xx
@marge1 I’ve cold capped for my 3 EC treatments and have come close to abandoning it, mainly because the uncertainty of how much shedding there will be drives me slightly nuts each time. I admire you for making that decision!!! I’ve hardly had any loss this time but have my first Docetaxel on Monday so we will see. Hating scarves/hairbands at the moment as they always slip. Can’t bring myself to go without as I have a large baldish patch on my crown. Slightly hate myself for not being brave enough. Keep wondering if shaving would be better but still have fringe and quite a bit else. Grumpy and not having a good day today. Ive just eaten a Twirl which was lovely but as I’m dairy intolerant probably not a good idea
Other ideas for nice things to watch that dont require brain power and look fabulous are - Emily in Paris - Netflix and The Gilded Age - Prime I think.
@pat …it’s ok to have a bad day and a twirl !!! I can’t bear the thought of wigs, scarves or my headbands with hair as it’s so hot. I recommend a panama hat to go out in… I’ve managed to get through many outdoor events with that and no-one would know I’m bald underneath… personally, I’m never going to go bald outside but admire those that do!
I’m going to watch Emily in Paris later… love it, total fluffy, happy stuff.
Hang on in there… good days, bad days… we can get through this xx
Wow wow wow I missed loads while I was off here for a bit. Amazing crafts skills from you ladies out there! I had a scan after 4 ECs and I’m pleased to report there have been massive shrinkage to my tumour and my lymph nodes have now all gone back to normal woohooo! I’m neo adjuvant so the current surgery plan is lumpectomy with a couple of lymph nodes removal, if the lymph nodes are all cancer free then no clearance needed! Starting weekly pax on Monday and hopefully like most of you reported will be a lot kinder than the wild ride that is EC.
@alig1961 I know we were pretty similar symptoms wise on EC, sorry to hear about your mouth, I had the exact same issue after EC #3 massive cracked sores on the side of lips making it hard to open my mouth wide to eat. Are you sure those aren’t cold sores? Mine was and cold sore creams (with the antivirals) multiple times a day was the trick to getting rid of them.
@marge1 as others have said you are definitely not a failure. Like the chemo side effects, we are all different as to how we find the cold cap. It’s not easy. I actually think it takes courage to decide that enough is enough and stop doing it if you feel it’s not right for you.x
Thanks for your lovely reply. It’s so difficult to make a decision when the outcome is still hair loss and not as we’d like it either way. Hope the docetaxil is kind to you. I’ve ventured out with the dog though feeling awful. Have Covid on top of side effects kicking in today and everyone seems to be on lovely holidays if I venture near Facebook. Grumpy too!!
@marge1 … my dog has been through all of this with me, more so than my husband as the dog sees all the sobbing and roaring in the woods! That’s dog therapy for you !!!
I’m also hating everyone and their holidays as we’re supposed to be in Italy this week … wherever I look I seem to see others living their best lives and I’m on the sofa (or out screaming with the dog!!!) … I try to imagine next year and how fab it’s going to be but it’s tough some days. We’re allowed to be grumpy … sod all those happy people
Hi @akioqey
Thanks for advice earlier. I know that carry the cold sore virus so I thought I’d give my gp a call. They are prescribing anti viral cream. I e developed an ulcer at the back of my throat this afternoon too so they’re also giving me antibiotics. More drugs!!! Fingers crossed that’s it for cycle 3. I hope docetoxal is kinder. Xx
Everyone’s holidays suck !!
Last year I couldn’t go away because I was caring for my mum after a hip replacement. She went private and booked it in the 6 weeks hols as I’m a teacher. Last year was hard. I’m an only child and have no siblings to help. I’m very close with my mum in fact she’s me best friend and was glad I could help.
This year can’t go away because of cancer. This year is even harder as I feel it’s me that’s stopping us from having fun.
On Monday my mum came to see me. She told me that she’s making an appointment for physio as her knee is hurting. If she dares to book a knee replacement for summer 25 I don’t know what I’ll do. . My daughter’s face was a picture and I could see that she was thinking exactly the same as me.
We will all have holidays and enjoy the sun again soon. But for now, I would kindly request that it turns cooler and we have the opposite of an Indian summer. Xx
Still reasonably grumpy though slightly less so as I have had a nice few hours out with both my daughters, hubby and grandaughter. Even better is that hubby is going to the first match at Man United tonight so I will have the sofa and telly to myself - son lives with us but I know he’ll be in his room and I won’t see him. I have invested in a nice looking piece of biscoff rocky road, to help wash down the twirl from earlier, and plan pyjamas and Bridgerton as soon as he stops faffing about and goes to the bloody football
@akioqey I’m having the same as you so hoping for the same result. The plum sized lymph node under my arm is definitely smaller but I’m not convinced that the breast lump is
Hello. I haven’t logged in for a while so hello everyone. I have last paciltaxel on Thursday - have had weekly and will be 12 sessions by the end. I have managed to work bits and bobs but do spend a lot of time in bed! Sleep has been terrible at night because of the hot sweats. I have a 3 week break (mostly because of work) and then start 4 rounds of AC for 8 weeks. Does anyone know how different it will feel?
I have been cold capping on the pacil and have been lucky and managed to keep enough hair for people not to notice/comment. My eyebrows are very thin but you don’t notice if I use some pencil!
Anyway feeling very nervous about AC and would rather just have the surgery but the tumour only partially responded to the pacil so they said I need the AC now rather than after surgery.
Any tips would be welcome! Sending love and strength to everyone - what a rollercoaster. Thank god for the Olympics over the last week weeks!! Xoxo
Fantastic news @akioqey … really pleased to hear another positive outcome
Yes to all the grumpiness … also supposed to have been on holiday this week too … so felt very bitter all week as well also I am so over summer holidays … please can the kids go back to school now and it be autumn (my favourite time of the year)
@emammi I don’t really have much advice, sorry …but your similar to me … tumour has shrunk, but not enough to go to surgery so I’m having 4 rounds of EC starting Wednesday. Like you feeling really anxious about starting yet another chemo type … but just keep telling myself you’ve got through the last ones you can do this … and it’s one step closer to the end
To all the ladies questioning themselves about whatever… cold capping/ going out in public bald/ what they are eating/ the surgery etc … throughout this whole process … DONT … we have to do what feels right for us individually not looking at what is working for others… no extra pressure or worry is needed right now … your body, your “journey”, your decisions!
We are all doing amazing in our own ways … and are strong ladies xx
So true @charlie22 we need to do what’s right for us throughout all this.
@alig1961 you need to get in there quick and tell your mum you’ve planned the trip of a lifetime for summer 2025 and her op has to fit around that!!! Are you still working as a teacher or did you stop? I can’t imagine doing anything apart from my bookkeeping at home so hats off (ha ha!) to those of you who do work outside the comfort of the home!
@pat … did hubby finally get out to footie and leave you alone with sexy Bridgerton??
@emammi … it’s horrible moving to another set of drugs with possibly a whole new set of symptoms. It’s the unknown at a time when we’re struggling to get some control over what’s happening. All I can say about EC/AC is that normally it’s grim for a few days and then you slowly get to feel better. My second week I managed to get out and about a fair amount (with family for gentle walks and nice pub garden lunches) but I did go easy … completely ignored all the chaos in the house (I’m with you @charlie22 … can’t wait for the school holidays to be over!) … I didn’t do my usual ‘super woman, look at me being an amazing mum, wife, householder, dog walking career woman’ thing !! I rest when I can and for once put myself first. Something I may try to continue a bit more once this is done
Happy weekend ladies … keep going, keep going, we’ve got this xx
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. I tried it for an hour and had such an awful headache making me feel sick that I decided to ditch it!! So if there is anyone else out there who did the same, I want you to know that you are not alone. I felt like a bit of a failure as everyone talks about cancer warriors and here I was dropping something due to a headache. But I’m trying to focus on embracing a new image - slimmer (eating is awful for me), cool wigs, beautiful colourful scarves.
so we will see. Hating scarves/hairbands at the moment as they always slip. Can’t bring myself to go without as I have a large baldish patch on my crown. Slightly hate myself for not being brave enough. Keep wondering if shaving would be better but still have fringe and quite a bit else. Grumpy and not having a good day today. Ive just eaten a Twirl which was lovely but as I’m dairy intolerant probably not a good idea 
. My daughter’s face was a picture and I could see that she was thinking exactly the same as me.
