Moan away Karen. If you can’t do that now when can you. Sorry that you are feeling so rotten though. Brighter skies are on the way.
My major complaints today are quite a few prominent spots which seem so much more noticable with so little hair, plus a particularly sore one in my arm pit. I was very spotty one week after FEC-1 so a pattern is developing. My other moan is I’m so fed up of the limited selection of bras I can wear. I’ve lots of lovely ones from my previous life but with implant they are just so wonky now. I know it’s going to take a while to settle down but after 10 weeks, I’m a bit desperate to wear something slightly more attractive again. But my moans are minor really.
Glad you are feeling a bit better today Emma. I am sure the singing will do your heart the world of good.
And well done Liz for getting through a marathon day of treatment yesterday. Hope the SEs continue to be managable. That goes for you as well Elaine.
Right, off to make some soup. Virtual hugs to all. xxxx
So sorry to hear you are feeling so rough Karen. It’s so hard to see the positives and the end when caught up in the middle of it like this. Moan away. That’s what we are all here for. Try and take it one day at a time and listen to your body. There is an end to all of this…we just need to get through it first. Xx
Karen, Emma, glad you’re both starting to pick up a little.
Had 2nd FEC yesterday and felt a little nauseous and tired, but then woke at 3am. Just glad that I’m now one third of the way through.
manic hoovering today on the steroids, so every cloud and all that!
We can all do this girls, remember the ‘down’ days are just the drugs and it will pass. We are all doing this for the best of reasons and it will work!
(can someone remind me I said that when I crash next week lol)
I am having a small glass of wine to celebrate the fact that it’s Friday - the first in 13 days. Toasting everyone on this thread and hoping for good days ahead for you all.
Well done Julie on reaching another milestone. My post-steriod house is sparkling although I fear a descent into it’s normal more chaotic state is imminent.
Woke up at stupid o clock again this morning, banging headache, stinking cold, sore downstairs at the front as I think I may have developed thrush and at the back because of the SE of the antibiotics, sore head, sore arm and then I burst into tears when when hubby got up to go to work. I don’t know why, I just said I didn’t want to do it anymore, this is totally out of character for me, I’m usually the stoic one.
Sorry for for the moan, but I’m totally fed up of feeling like this, even the good days are only 90%, I want to feel like me again ?
Woke up at stupid o clock again this morning, banging headache, stinking cold, sore downstairs at the front as I think I may have developed thrush and at the back because of the SE of the antibiotics, sore head, sore arm and then I burst into tears when when hubby got up to go to work. I don’t know why, I just said I didn’t want to do it anymore, this is totally out of character for me, I’m usually the stoic one.
Sorry for for the moan, but I’m totally fed up of feeling like this, even the good days are only 90%, I want to feel like me again
Oh janey I’m so sorry you’re having such a tough time. I got very sore downstairs but I developed several cysts. It was painful even sitting down. Related to hair loss and chemo but so painful. They took about 3 weeks to subside.
You are not alone in this, we have all been where you are and will be again. I remember a wise woman telling me you are still the same you inside and you will be back to that strong woman again. Big virtual hugs. xx
Oh it’s a roller coaster, and a bad one at that. I’m a great advocate of getting things out of your system Jayne, so crying is good, even if you don’t recognise yourself. As Suzy said you are in there somewhere, and that beautiful strong woman will emerge. You just need to lean on people for a bit.
I’m feeling ashamed as I just snapped at my husband for buying me spearmint chewing gum for my car instead of peppermint. I always have peppermint, and find it amazing after 23 years of marriage that he hasn’t heard me say on plenty of occasions that I prefer it. Normally I would have thanked him and been gracious while inwardly stewing about yet another thing I should do myself because nobody else cares enough to get it right. It’s just chewing gum for goodness sake, but somehow it all just seemed too much. I felt like shouting ‘notice me’!!!
Oh Jayne, I am sorry. Sending a virtual hug to you.
After my cheerfulness of last night, I’ve woken feeling a bit blue too. Definitely the most tired I’ve felt since chemo began and a bit tearful as well. Perhaps that glass of Friday wine was a bad move. Also feeling a bit grumpy with hubby and it’s not really his fault. He has a tooth/sinus (to be confirmed) infection which only seems to bother him when he’s lying down. So, the last three nights we have had very disturbed sleep which I don’t think has helped my energy levels. He had a brain haemorrhage eight years ago so any head pain obviously makes him a bit nervous although does suffer from “man flu syndrome” when it comes to his health. Anyway, the pair of us are feeling sorry for ourselves today.
Suzy, thanks for your wise words. It’s good to have you give your experiences being a little bit further down the road than we are. I hope you are feeling okay today after your two treatments this week.
Thank you ladies, had a few more tears reading your lovely words, again totally unlike me. My BCN, did say it would hit me one day maybe unexpectedly and it did, I’ve been doing so well, since I found this bas***d thing in May so maybe it’s my turn.
luckily I haven’t took it out on Andy (my husband) yet, he’s been so lovely and sometimes I even feel sorry for him as he just wants to help me and take this crap away, but he’s lost and just doesn’t know what to do. I’m the strong one, so I think it has been very difficult for him to see me like this, I think other halfs get forgotten sometimes, I’m sure they are all going through their own hell, but fell like they can’t moan about it.
Anyway, I’ve got dressed, washed my head (similar to doing your hair), put my makeup on and do feel a bit better, when Andy gets home from work, I think we’ll go out for some fresh air.
Sorry you’re having a hard time ladies, there’s no denying its really tough. Keep talking to each other, kind friends and the helpline - I called Samaritans one night as felt so bad at 11pm and no one else to turn to.
Feeling you can’t go on is normal, often after steroid high. I had 3 x fec, then weekly taxol - should have been 12 weeks but I missed about week 7 as I was in such a bad place. Onc said 12 was the aim, but he’d be happy if I managed 9. So there is flexibility.
You must tell the professionals how you feel. I ended up on anti depressants and sleeping tablets as I couldn’t cope.
1 year on and its so much better - still on meds and tired, but stable and starting to move on xx
Thanks for all your honesty and those giving wise council about the importance of sharing the good and the bad. Reading both helps each of us realise we’re not alone on this journey - different for each person but personal, real, painful, full of ups and downs - a journey where we need strong walking boots and where this forum and FB, BCN, MacMillan serve as essential walking buddies, so we don’t need to be alone, even at stupid o’clock.
The getting to know each other, that developing trust and seeing a picture if you have used FB, brings a name to a person and then even more - sharing about more of lives. Why - we are only a figure tap away.
I’ve been very tired and not my usual self the last few days and have felt so frustrated with myself and also my husband. Yet some of those were probably unreasonable and more chemo talk - certainly found it hard to chase away the negative and lift the spirits seeking the positives.
There are some inspiring threads/replies - thank you. Stories on here really help when you are searching for answers and ideas, so a big thank you to everyone. You honesty has really helped me give me permission to stop and also rest when needed. Thank you all xxxxx
Morning all. If I have to be doing this I’m so pleased to have found such a great supportive group of lovely ladies to do it with. We really are all in this together, and the good thing is we will all have bad times, but not all at the same time. There will always be someone to pick us up. I’m reminded of a lovely saying. “A good friend knows the song in your heart and sings it back to you when you have forgotten the words”.
I’ve had a difficult couple of days. I think I was expecting to feel more normal on Friday, which I did almost, but didn’t expect to still feel crap yesterday. I was very tearful and frustrated. I got annoyed with having to wear a hat as it was making me too hot. My temp was fine though. I was hungry and couldn’t stop eating, which then made me feel uncomfortable and annoyed with myself. I was tired but couldn’t sleep. Basically everything was wrong, but it all seemed so little and I couldn’t comprehend the impact on me. The waking at silly o clock had become an issue as well, though I put this down mostly to my husbands cold.
It broke last night. I went to a fireworks display which was as my first ‘public’ event with a hat on. I was stil too hot with just a light coat on so stood there in a t shirt. We got home about 9pm, having been awake since 3am, and I was wired. I gradually felt cooler and was delighted when I actually felt cold. It was a pleasure to snuggle into bed with a hot chocolate. I was still awake at 6am, but had a much better night, and lying here in bed things don’t look as bleak as they did yesterday.
…and the eagle has landed. It’s easy to underestimate the impact this can have on a body.
Much love to you all today. It’s a new day and one closer to this all being over. Xxx
Emma, so glad you are feeling improved. And I love that saying about the song in your heart. Very glad you brought it to our attention.
After a rubbish day for me yesterday, I too feel a lot better today. Husband’s meds have finally started kicking in for his tooth infection so we both had a glorious almost nine hours of uninterupted sleep last night. Today, apart from a few minor niggles like the roof of my mouth being a bit sore and a big spot in my armpit that is both painful and, being on my MX side, made me have a moment of hypochondria thinking it was something more sinister, I feel pretty chipper. I’ve put my face on and am determined to have a good day today.
I hope everyone else manages to take some pleasure out of today. Virtual hugs to all. Ruth xxxx
i haven’t posted much but I read all of your posts and you are all giving me so much help and support without even knowing it. I’m on day 17 of fec1 and I could do with some advice. My hair has been coming out since yesterday, when I run my hands through it I get a handful every time, although I still look like I have a full head, just a bit thinner. My question is do I wash and dry it or not, I need to go to work tomorrow (maybe crazy but I’m trying to keep things as normal as possible, only had 2 days off so far) and it could do with a wash, I wouldn’t normally step outside without it looking halfway normal, but I guess life isn’t normal now. I just don’t know if I’m ready to have it all off yet, but if I wash it I’m afraid it all might just come out. Did anyone else wash n go at this point ?
i kept treating my hair exactly the same. I figure whatever was happening, was going on beneath the surface, and whatever I did on the outside wouldn’t change that. I still dry it as normal even though I have very little left on top.
if you want to join the Facebook page, send me a friend request and I’ll add you. It is a secret group so you won’t be able to find it otherwise. I’m. Emma.dean3
Think you are doing so well to be at work so far with only a couple of days off Understand totally about the keeping things as normal as you can.
I have done quite a bit from home even though officially off sick - it has helped me too. My job isn’t one where I can go in to work because of the infection risk but I can support those I work with to some extent both by phone and email.
As as to washing my hair at the point that you’re at - I was going out to meet with family on day 17 and washed my hair and it was coming out in handfuls and I didn’t know if I was going to be able to dry it and look ok. I did manage but I was on the edge of what I could cope with and I decided that it was coming off the next day - but that was my journey.
Part of it will depend on your hair type, how thick it is and how much you have to style it with a dryer etc. I wouldn’t be able to get mine to look presentable without some help from mousse and a hairdryer ;) You don’t say what your thoughts are about wigs or hats /scarves and if you have bought anything yet?
Thinking of you and sure you will find the right way forwards so that you feel confident in going to work in the morning. Great to have you as part of the group.
thanks for your replies, it’s so helpful having you all. I’m having a bit of a rethink, I’m not going to work tomorrow, I’ve got an appointment at 2 at the look good feel better session, hopefully I’ll get some tips there. I’m finding this part the toughest of the whole process so far, I had decided that the minute it started coming out I was going to shave it off but the reality is so different, I know that it’s going and that I’m going to be bald for a while, but every time I think I’m ready to go for it, someone says that they know someone who had the same treatment and didn’t loose all of their hair, so I start hanging onto the tiniest bit of hope and decide not to shave. I’ve never been this indecisive, it’s like there’s 3 of me in my head, brave Audrey saying you know it’s going to happen anyway so just shave, scared Audrey saying just go hide under the duvet for 6 months and see what it’s like in the spring, then in denial Audrey saying don’t shave you can’t possibly loose your hair. I guess this just a blue day, hopefully feel brighter tomorrow
Evening ladies, sorry to hear that some of you have been having a tough time of late. I hope things are improving for you all.
Well Friday was FEC2 and so far things have been better this time around. Chemo was better through the picc line - Jayne, I really hope you manage to get one.
The picc line site is still sore and I’m finding it difficult to get my arm in a comfortable position but it’s a small price to pay!
They gave me the wonder drug - Emend No sickness this time, although the nausea was much worse on Friday evening and I was wondering if it would have been better out than in. The nausea has settled and it’s definitely better than actually being sick!
I’ve been quite tired since but managed to join my family for lunch today to celebrate my nephew’s 8th birthday. The Lansoprazole is definitely helping too, no acid reflux so far. My new SE this time around is hiccups!
Audrey - I have really thick hair and decided to cold cap. My hair started to thin on Day 18 of FEC1. I avoided washing it for a week (grim - I used to be a wash every day girl!) as I wanted to make sure I still had a good covering for the cold cap on round 2. Washed it today and a massive handful came out - however, because my hair is thick, I still have good coverage. So, I think it really does come down to the thickness of your hair and how much styling is required. I’m not ready for the clippers, so I’m opting for washing and styling my hair as little as possible!
Love and hugs to all…we will get through this! xxx
Understand totally about the keeping things as normal as you can.