26-11-2018 05:14 PM
26-11-2018 03:30 PM
26-11-2018 03:19 PM
Another rubbish night with hot flushes and nightmares. However, I dragged myself in to town, got some nice presents for my husband, then got back home, had some soup and crashed in to bed for an hour and a half. Absolutely shattered! Just got up and had another bite to eat and am feeling so much better. I did try to reduce my daytime sleeps last week, as I thought they may be affecting my ability to sleep at night, but that theory seems to be out of the window, so, like you Galligirl, I've decided that I might as well get some sleep when I can!
MamaTony: I'm also triple negative. So far I have very deliberately not read up anything anywhere on this, as I am terrified what I might find. However, I am very slowly (maybe, possibly ) coming to the conclusion that I can't shut out all knowledge forever and perhaps, just maybe, finding out a bit more might be a good thing. Did you google this at all? I've been told by various people here on the forum that that is a very BAD idea. Or did you just get some books from the library? I'm really not sure how to go about finding out more without scaring myself too much! I might ask at Maggies when I go there on Thursday and will let you know if they have any good tips.
LisaT: So glad you had a nice weekend and birthday. It's so important to find those happier, lighter moments.
And finally, Galligirl, I think we all want Spring to arrive, with lots of hope, sunshine and flowers. It's not about wishing time away, just looking forward to a brighter future (I'd better stop here, otherwise I'll start blubbing! Seriously, I thought I'd done with tears, but they are often not that far from the surface!). So here's to Spring and Sunshine!!!
26-11-2018 12:05 PM
26-11-2018 08:43 AM
Nikki49 - thanks for taking the time to pop in....so good to reinforce that there is light at the end of the tunnel ☀️
Alittlepixie - I hope you are a little more on top of your pain and that your visit to the oncologist nurse finds some resolution for you....!
GabyF - I am also having problems sleeping- too hot, twitchy legs, head spinning, can’t remember the last time I actually slept well! I am lucky I can sleep during the day...probably the wrong thing to do but I have to as I am soooo tired 💤.
Does anyone know what the hot flush thing is all about? I get the whole reduction in er but why do you get hot? Must google it!
MamaTony - I have my first T on Thursday....feeling anxious so following your tips avidly! Bit C tablets at the ready!
LisaT - hope you had a lovely weekend away celebrating your birthday 🎂
and to everyone....hang in there...it is a long slog...I don’t want to wish time away but I dream of spring sunshine and daffodils. GGx
26-11-2018 12:01 AM
25-11-2018 11:04 PM
Those hot sweats are hideous. They started just at night, but am now having them daytime too. Thought the whole menopause thing was over for me as I had a hysterectomy 9 years ago, but thanks to chemo, it’s all back with a vengeance. It just keeps on giving doesn’t it 😡😡
25-11-2018 08:56 PM
It really is fantastic to hear from someone who has been through all this rubbish and come out the other side. Thank you, Nikki.
Little Pixie, I hope you were able to sort something out to deal with your pain and are feeling a bit better.
Went for a nice walk in our local park with husband today - good to get some fresh air, although I'm feeling breathless again.Also managed to do some Christmas shopping locally, which was very unusual for us - we're usually in a slight panic by mid-December! I'm planning to go in to town tomorrow get a few more pressies, something useful to do with my time anyway.
LisaT & Jacqs: I am trying not to snack too much, as I realised I was putting on a lot of weight. I have tried to get temporary relief from the bad taste by drinking lots of different herbal teas, which kind of helps, though by dinner tonight I was so desperate for food that my husband had to remind me to slow down! So maybe that doesn't quite work either?!
Rubbish night last night: I felt really hot one minute, then threw the duet off, only to get absolutely freezing within seconds, so kept waking up and eventually gave up around 5am - awake until c.7am, then fell back asleep, only to be woken at 8am by our neighbour's son playing some wild game that involved screaming the house down (he's only 3!). Hopefully I'll sleep a bit better tonight, as long as my body doesn't do that hot-cold thing again!
Love to you all,
25-11-2018 09:47 AM
25-11-2018 08:09 AM - edited 25-11-2018 08:16 AM
Good morning ladies,
I'm from the September 2013 thread, I'm not on here much these days but I do like to pop in particularly on the September group to see how you are all doing.
When you get that rotten mouth - Some of the girls in my group drank tonic water prior to eating they swore it made food taste near to normal, unfortunately for me I don't like it.
I had awful pain on the 'T' part of FEC-T, I complained to my Onc to try to score some stronger painkillers for next time - I didn't want a reduction in chemo strength because hey that's why we're doing this...... to blast this disease to kingdom come. Anyway he prescribed what he called the steroid tail, yes it is more steroids but you take them in ever decreasing doses daily rather than just the sudden stop. It was like a miracle cure.
PS Top tip! I was told to take my steroids at 8am & noon, they never interfered with my sleep 😊
As for me now, I had skin sparing mx, then reconstruction surgery once chemo finished, then had a reduction on good boob to match, had a nipple made and then tattoo'd - haha I now got the boobs of a 20 yr old, every cloud and all that 😃
As I was triple negative I'm not on any meds which was a bit scary as I felt left adrift without a life belt, my Onc signed me off this year and my consultant will now only see me annually as opposed to 6 monthly for another 5 yrs (he did say he could discharge me but I like his reassurance).
So life does go on, you just appreciate it a bit more.
Best of luck ladies x
PS my hair grew back curly, was dead straight before lol, it's not so curly now more of a kink. I used to have quite thick hair but alas it's quite thin now ☹️, on a plus note, leg & armpit hair is really sparse 😆
24-11-2018 08:46 PM
Hello Lovely Ladies.
Seems like everyone is suffering this week.
Gaby - I sympathise over the horrid taste. I had my double dose of Paclitaxel & Carbo on Thursday and since have had cystitis, sore tummy & rib pain, daily nosebleeds & that awful taste, so have been feeling sorry for myself for last few days. Don’t stress about the EC just yet - take it one step at a time & it seems more do-able. Not sure if EC is like FEC but with just 2 of the drugs instead of 3 ?
A Little Pixie - so sorry to hear you’re suffering so much my lovely. I agree with everyone that you need to ask for some stronger painkillers to make it more bearable. I’ve been getting quite a lot of pain in my ribs but the oncologist just said to see how it goes as it’s not such common SE with drugs i’m on. If it does keep on, she said she’d organise a scan to see what’s going on as it’s possibly to do with lingering healing from breast surgery.
Lisa T - i’m with you. The taste doesn’t seem quite so bad when you’re actually eating, so i’m guilty of picking constantly at the moment, have put on 1/2 stone in last couple weeks🐷🐷
Has anyone tried the fizzy vitamin c tablet dissolved on the tongue? Just 1/2 tablet each night. One of the ladies on an earlier thread suggested it for oral thrush but it does help a little in clearing that awful taste & as it’s only vitamin c, doesn’t cause any problems.
Looking forward to spending the day with OH tomorrow. Haven’t seen much of him the last week or so as he was working away last weekend & has been busy all of this week.
Enjoy what’s left of the weekend xx
24-11-2018 05:43 PM
Little Pixie: I hope you managed to get a bit of fresh air and that your SEs are starting to ease. There must be something you can take to lessen the pain a bit?! I agree with LisaT, contact your Chemo nurse and badger them for help - I don't see why you should have to put up with so much discomfort and pain! I had a sleep after lunch and am feeling a little less spaced-out. This morning I had a really bad bout of chemo brain, not being able to remember words, what I had said/did etc. My kids just laughed and groaned
LisaT: Thanks for your encouragement. I'll be on EC, with out the F (whatever that stands for!), but hopefully it will be okish. I just want all of this to be over
Ktk: Gosh you're brave. I don't think I'd have the confidence to do all that at school functions, well done you! Mind you, I think I definitively saw a couple of mums at the parents' evening who seemed to have rather thin hair and were wearing scarves. Sadly there was no time to introduce myself (they were new to the school I think) and anyway, what would I have said "Excuse me, I notice you've lost your hair. etc etc" Not a great conversation starter!
Am planning to visit the Maggies Centre at St Barts on Thursday, if I feel up to it. They've got a drop-in walking session, hair care (for what's left!) and general advice day then, so I'll give it a go. I feel I could do with a little more socialising and my local Macmillan Centre doesn't really offer that.
Hope everyone has a reasonable Sunday. Might go out for a walk with my husband, if the weather improves (very grey and dank here in London).
24-11-2018 02:51 PM
24-11-2018 01:20 PM
24-11-2018 12:43 PM
24-11-2018 12:20 PM
we all seem to have gone a bit quiet! I am feeling a bit rubbish today, as I had my doubledose of carboplatin and paclitaxel on Wednesday. Didn't sleep well, horrid taste in my mouth and generally just very off-colour, so nothing unusual there . I've got two more session of Paclitaxel and then I switch to EC, which I am rather apprehensive about. Some people don't seem to have SEs that are too awful and others really have a rough time. However, it's not as if I have any choice in this, so I'll just have to see what happens.
Not much to report here otherwise. Just hope everyone is ok?
21-11-2018 08:52 PM
I think you're incredibly brave letting your kids loose on your hair! Sounds like you actually had loads of fun together though, which is so important at the moment and must have outweighed any worries you had. Nailscissors??? Actually, sounds like the sort of thing I would do - being smaller and perhaps therefore safer?! As for time, well that doesn't matter - it's not as though I have loads to do at the moment.
But a Year 11 Prom, well you really are brave!! I haven't told any of the parents at my kids schools about the BC, partly because I don't know them that well and partly because my son is keen to keep school a cancer-free zone, which I can understand. I was slightly apprehensive just going to a parent evening the other day. No one said anything, as everyone was too busy trying to get to their 5 mins slots. Christmas Fair is coming up soon though, so I will need to think what to do, if anyone comments on my appearance. Maybe they won't? Did anyone notice at the Prom?
21-11-2018 06:15 PM
21-11-2018 05:41 PM
Thanks so much, Jacqs and Little Pixie. I'll mull things over for a few days and try to find someone with a clipper (hubby doesn't have one!). I've already got a Pixie cut - got that a few weeks ago, but my hair has rather surprisingly grown a bit since then while at the same time falling out, so I do look rather odd now with a few longer bits and quite a lot of thin patches, lovely!
Little Pixie: what an exciting career you have ahead of you, plus a a lovely creative hobby (actually sounds like your rather good / advanced at the jewellery making, if you're selling it, brilliant!). But yes, I can imagine upholstery is physically tough. Still, you've got something wonderful to return to next summer!
Jacqs: How nice you can drop that last chemo session! I'll be interested to hear how you get on with the genetic counselling sessions. I'm due to get my results on the genetic test early next week and may be going down the same route. I had my double dose today - I usually feel fine on the day and even the next day; the carboplatin hits me on Fridays and particular Saturdays. i.e. just in time for the weekend. I hope everything goes smoothly for you tomorrow.
21-11-2018 11:56 AM