I definitely have some fluff emerging and hope that the T doesn’t make it all fall out! Looked up how fast hair grows....0.35mm a day! At 1mm every 3 days....a centimetre by Christmas...🤣🤞🎉
Hi Everyone. Hope you’re all doing ok.
A Little Pixie - I do hope you get switched to weekly treatments soon. I was so worried when they said i’d Have to start weekly paclitaxel, but to be honest it’s so much more manageable than 3 weekly FEC and the SE’s are not as severe. I’ve had some rib pain but nothing like you describe. Sending you a big hug xx
Today i’ve been to have my blood tests for genetic test - will have results in 3 weeks. If it’s positive, i’ll join a drug trial for women with BRACA gene & TNBC. It’ll be 12 months on either a real drug or a placebo, but it’s peace of mind knowing they’ll be keeping an eye on me when chemo is finished.
Now I need to pysche myself up for going back to work for few hours tomorrow. It’s getting so busy in run up to Christmas & am feeling guilty that i’m leaving everything to my OH. Xx
Hi Everyone. Hope you’re all doing ok.
A Little Pixie - I do hope they get you switched to weekly Paclitaxel. I was so worried when I was told they wanted me to switch to weekly treatments, but to be honest it’s been much more manageable than 3 weekly FEC. I’ve had some pain in my ribs but nothing like what you’re describing. Sending a big hug xx
Today was my blood tests for BRACA testing. Now just got to wait 3 weeks for results. If it’s a positive, i’ll join a drug trial at the end of my chemo for 12 months. It’s for those with a genetic link & TNBC. I won’t know if i’m on a real drug or a placebo, but it’s extra peace of mind that they’ll be keeping a close eye on me.
Am now going to psyche myself up for going into work for few hours tomorrow to help my OH. It’s getting so busy on run up to Christmas and i’m feeling guilty that i’m at home all day.
Had a new SE last night - felt very dizzy most of the night and when I first got up Had a long, hot shower, breakfast and then staggered into hospital for bloods etc. They checked me out, but everything seems as normal, so it's just another of those unexpected & unpleasant things, lovely!
LittlePixie: so glad they've identified what the problem is. Paclitaxel is not too bad at all (it's the carboplatin that gets me), so hopefully you should start to feel better very soon
Met a former colleague this afternoon for a tea. She had Hodgkin's Lymphoma years ago and has been clear of that dreadful cancer for years. It was so good to see someone with a great positive story. We have to keep reminding ourselves that we will get through this and live a happy, healthy and long life!
i tried the frozen pineapple last night & it definitely does help. I’ve just ordered some ice lolly holders & am going to make pineapple lollies.
i think there are a few of us suffering from hot flushes & they do disrupt your sleep. I woke up at 3am this morning & couldn’t get back to sleep. Like you i’m on weekly Paclitaxel. The only positive is that my consultant did say that once chemo was finished, it should stop & am hoping that’s the end of all things menopausal - lets hope & pray!
Have taken to sleeping on a towel so I can mop my bald sweaty little head as & when needed. 🤣🤣xx
Hi Mama Tony,
No I'm not on any special diet, well I am on a low potassium diet but that's because my kidneys are knackered, nothing to do with the cancer as had it years before. Think chemo may have sped up the deterioration of my kidneys though ☹️.
Some people say dairy is bad? I don't drink milk now, I drink oat milk but more because it's low potassium.
Life is for living and I figure it would be pretty miserable existence going without chocolate & wine 😬
I put on 2 and a half stone during treatment, my main aim was to lose it and eat a healthy diet. I lost all the weight plus a little more, joined a gym and reckon I'm fitter now than I was 20 yrs ago.
Because of the trip neg diagnosis I did opt for brca testing - which thank goodness was negative.
I can only go by my experience - I had 6 monthly check ups (cop a feel) alternating with consultant and oncologist but only 1 mammogram a year - that was for 5 years.
This year I had the choice to be discharged or see the consultant once a year - I wanted the reassurance. I'm not sure how long the annual mammo's go on for....
Take care Nikki x
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!!!
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
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 😡😡
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,
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 😆
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
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).
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?
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?
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.
Good morning all.
Gaby - I did the shave thing in 2 stages. I went to my hairdresser at first and asked for a really short pixie cut. I had that for almost 2 weeks then my hair started to really thin out so I got my hubby to do a number 2 all over with his clippers. That lasted only about a week, then I started to get bald patches, so I basically rubbed my head over the sink & the rest of it pretty much came out.
I had my stepdaughter & my best friend there, but had a no tears rule because I was trying to be positive about it & to be honest I handled it a lot better that I thought I would. I had long curls which I loved, but being bald is not the worst part of the situation we find ourselves in!
If using clippers you do have different settings, so you can choose the longest one to start with or go to the hairdresser & try the pixie cut. Pinterest is great to check out cropped cuts.
You can do this - be strong, be positive 💪💕
Well all went well yesterday. My oncologist has agreed that I can complete my chemo before Christmas. I was due to have my last session just before New Year, but she’s happy to knock the last one on the head. Then had my counselling session for the genetic testing, followed by a walk round the Christmas markets which was lovely but really cold & damp. Today i’m feeling exhausted so it’s going to be a quiet one as it’s chemo again tomorrow. Double dose of Paclitaxel & Carboplatin. What joys!
hope everyone is well xx
LIsa - HAPPY BIRTHDAY for yesterday! I hope you were spoilt rotten by your loved ones! How lovely to be going to the Lake District. Hopefully the weather will be kind and allow you to go for some nice walks and enjoy the stunning scenery.
I'm just "talking" about courses and the OU, Lisa! Not actualy doing them, that would be far to organised! I had a look at the OU website yesterday and there weren't any short courses that I fancied - anyway, I kind of panicked, when I read all the stuff about essays and deadlines! I am really not sure that I want to commit to that sort of thing right now. I did find a one-day jewellery-making course in London which sounded fun and rather less serious. May book myself on to that in Jan/Feb, once I know how things go on the new regime of EC. Little Pixie:are you a professional jewellery maker or doing it as a hobby? I've always fancied doing something hands-on and creative, so maybe now is the time to give it a go - for one day at least, which is about as much time as I can concentrate for I think!
Christmas - well, you all inspired me, so today I ordered some presents online and went shopping for my kids in our local art shop. Both of them love drawing, painting etc. and I was quite sucessful in getting them lots of little interesting bits to keep them busy. Need to get more stuff, especially as I have several December birthdays to sort out as well, but at least I can now fill the next few days with shopping, wrapping, and then, yes, Christmas cards - hurray, I've got something to do! I don't usually get my cards off until the day before Christmas, sometimes even after Christmas, but this year I should manage to get all of them out on time.
Bloods and Picc Line care this morning. My Picc Line has got a bit blocked again (fluids go in, but no blood comes out ), so they injected something that should clear the line by tomorrow. THis shouldn't cause any problems for the chemo tomorrow, just a bit of a nuisance today.