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.
Happy Birthday Lisa. Enjoy your trip to Newby Bridge. Sounds like the perfect way to escape for a few days.
Can’t agree more about the boredom. I’ve already bought most of my presents for Christmas and today started to write out Christmas cards. Don’t know what I’m going to do once we do get into December 🙃.
At least tomorrow is a busy day. Bloods 1st thing in the morning followed by an appointment with my oncologist. Then in the afternoon, I have my therapy session for genetic testing and as i’ll be in Manchester for the afternoon, we’re going to have a little wander around the Christmas markets before heading home.
Hope everyone has a good week xx
💐 🎈Happy Birthday 🎂 💐
It would be lovely if you get the chance to get away to such a beautiful part of the world for a couple of days!
Fresh air, log fires, gorgeous views, maybe a pub lunch or two? What a treat! Enjoy your day!
A relief to know you are not alone...it helps I think.
i would call myself a sort of ‘get on and do it’ sort of person...like a little project on the go whether around the house, holiday shopping, horses and animals...Now I have these empty days and I don’t seem to have the motivation or energy to do anything constructive. I am not really a big social person, I don’t have hoards visiting or popping in ...that’s not really me but I do look forward to my son coming home in the afternoon!
I thought about learning something new and, like you felt I couldn’t commit. Maybe the OU would be good, they do short courses don’t they?
I cant make decisions either...it’s like that little bit of sparkle has gone for the time being....I can’t concentrate, I can’t make decisions and I am frustrated by this person that isn’t really me...I did look at a photo the other day...taken weeks before my diagnosis....tarted up going out to a party (rare night out!) I don’t recognise that person anymore...
music sounds a good idea! Get that 🎹 practice in....is there a certain piece of music you could set yourself as a little challenge?
The gym is just a good way of getting me out of the house...I just do low key cycling, cross training, walking...a few weights to try and ease the tightness across my chest after mx. Classes are a step too far for me...hehehehe....I would have to book those 🤣.
A new pet is an excellent idea...we got a puppy at the end of last year ( our old lab had been pts a couple of years before) my son drove me mad begging and I gave in and bought a Vizsla - she has been amazing company for me over the last 6 months, always got a smile on her face and a warm welcome home. I also lost my horse just after my diagnosis....very sudden...so having the dog has given me a reason to get up and out on these dark mornings...
Here’s to the little positive things that just about keep us sane in this ever changing new world we are in. GGx
SOOO glad to hear I'm not the only one who is bored!! Fairly recently some journalist who's got cancer (can't remember his name) also moaned that having cancer is really boring, and he is defintively right! It's probably partly because we didn't exactly choose this career break and it's not of course particularly cheerful. Also, even when I do plan something, like you, I lose focus. I have a few things that I thought I would get stuck in to, like digging around in my family history (I trained as a historian years ago, so it's kind of interesting to go back to this type of research); and maybe exploring some new skills, like writing or jewellery making, but now that the SEs have become so unpredictable, I haven't wanted to sign up for any courses etc, in case I can't make it on that pearticular day. My husband suggested doing an Open University course and I dismissed that instantly, but actually, thinking about it now, maybe it's worth looking in to? I don't know - I just can't seem to make decisions! I used to play the piano a lot when I was young, so this morning, after many years of not really touching our piano, I had a 20 minute practice, which oddly enough cheered me up a bit - I wasn't as awful as I thought I would be! I think I'll try to be organised an build a bit of piano practice in to my day (let's see how long I stick with this!). I am also thinking of visiting a Maggies Centre, as I have heard so many positive things about this. Sadly, mine nearest one still involves an hour's worth of travelling, but hopefully it wil be worth it.
I'm impressed you've joined a gym - have you managed to go to regular classes? My Pilates teacher comes to our home, as my husband joins in with me and his work hours are so irregular, that we decided this would be the best option. Can't wriggle out of the class that way either, as I have no excuse about not feeling up to walking/travelling to a gym etc.
Our darling cat died last summer (the day before I got my cancer diagnosis, so that was a lovely week!) and we have just decided to get a kitten in January. My kids are so excited (my 17-year old daughter burst in to tears when I suggested this!) and I am looking forward to having a bit of company. So there is something positive to look forward to.
GabyF - that sums up how I feel...I’m bored too...and not sure what to do about it. I struggle to even read a book, I seem to lack focus. It’s good to know I’m not going mad by myself 😁.
I have joined a gym to give me something to ‘go’ to...and hopefully help me keep going through the winter...
Enjoy your Pilates 💪 it is soooo good for you and I hope you breathing improves too. GG
This whole thing is a bit of a rollercoaster of emotions and energy levels, and I am constantly having to remind myself of the endgoal to help me deal with it all. This week I thought I'd have more energy, as it's been drug-free. However, Friday and Saturday I had a bad stomach ache, not sure why, and today the breathlessness has come back with a vengeance.On the up-side, my taste is fully restored and I have been enjoying my food, which has been such a nice change. My mood has also been up and down, more down than up today. I guess essentially I'm bored - I've got things I can do, but I feel like I'm just filling time. I've had so many years of balancing fulltime employment and kids (and moaning about it! ) and I'm just not used to having to having all this spare time. It's difficult to plan specific activities, as I am never quite sure whether I'm going to be up to it on the day, but I think I need to do more of that nevertheless - I guess I can always change my plans, if I'm feeling a bit rubbish.
Another thing that has been troubling me is that I seem to be gaining weight. After my initial diagnosis I lost almost 4 kilos within a week and athough that was obviously due to the shock, I was actually quite pleased with the slimmer me. Then I gradually regained that weight, which was fine, but now my weight seems to be steadily creeping beyond my average.I don't know if that's drug-induced, or if I'm just eating too much! At least I've got a Pilates class coming up tomorrow evening, so I can try to work off some of the excess!
Hope everyone had a good weekend.
What a difference a day makes...I feel soooo much better today! Have to keep reminding myself on the really low days that ‘this too shall pass’ and it does...a new day and seemingly a load more energy too! Hopefully will continue and I can start to feel more positive....and active and generally more me...! Happy Days 😎GGxx
Lisa-T : Fab news! The thought of going back to waiting for results scares me 😟 so pleased the news was good.
Mama Tony ; Nice to hear that T is treating you kindly at the moment. Everything I read just fills me with dread....
GabyF : Make the most of your extra recovery time....💃
Catgarland : Finger crossed for T success....delighted you too have not had any SE yet....long may it last!
I have spent most most of the last day or two asleep! Decided my naughtyphils are at their low point...earlier in cycle than before but same ‘knocked out’ feeling. Hoping to bounce back today and get out....
Lisa - I hope your mammogram was ok today. It must have been a very stressful morning for you. Thinking of you! As for waking up early, it's really annoying. I tend to be awake for a couple of hours at night on the steroids - I try not to stress about it and just make sure I get some extra sleep after lunch. You've got a very good excuse for an afternoon nap!
My chemo didn't happen yesterday as my neutrophils were too low. Someone somewhere on the Forum called them "Naughtyphils" which definitively applies to mine! I was a bit disappointed initially, but actually now I'm quite pleased, as it gives my body a short break from all the strong medication. In fact I feel so much better today, still tired, but no aches, cramps, funny tastes etc. which makes a very nice change. Hopefully by next week, my bloods will be back to where they should be and I'll be ready for another round of SEs!
Hope everyone has a reasonable night. Gaby x