October 2015 Chemotherapy starters - please join!

[PeggyCat]

Hi Barry, yes I saw that. I noticed it was said she would be back on the programme tomorrow morning so it'll be interesting to see what she does with her hair bearing in mind she said she hadn't done much with it for the video today. I know I certainly wouldn't have wanted to be on telly with my cold cap hair!!

[bazza7676]

Victoria Derbyshire's first chemo cycle http://www.bbc.co.uk/news/health-34776870

[Kazzer52]

Hi, thanks for the advice regarding spots. Both my spots are huge with white heads and are really sore and as they are on my buttocks it's making it difficult to sit down comfortably 😊😊 x

[PeggyCat]

Thanks Jen and Sandra for your tips. Interesting to hear you had them too Sandra as it makes me feel a bit less of a freak but at the same time I'm sorry you had to put up with it!  xx

[san1952]

hi I had these while on chemo and the GP gave me antifungal cream which got rid of them Hugs Sandra

[JenJen]

Hi Ruth x I tend to put tea tree on spots or witchstick which is a bit less harsh on the skin but given tea trees antibacterial properties id be using tea tree at the mo x make sure you can moisturise though once they clear up it drys out the skin a bit

Jen x

[PeggyCat]

Hi everyone,

As some of you already know, I have developed quite a few painful spots this week located on back, legs, head, bum and armpit. They seem to linger for ages. Glamorous, not. I'm trying tea tree oil, antiseptic cream and TCP but if anyone has any tips I'd be glad to hear them. It's a long time ago since I was a spotty teenager so I'm probably well behind on what's good to use these days.

Hope everyone is doing okay.

xxxx

[JenJen]

Thanks Caffy x I am waiting for hubby to come home on his leave his standards are way higher than mine so itll get blitzed enough for the 3 weeks x its certainly something I have had I am usually an in bed by 10 asleep not long after girl and I could literally go out and party the night away!

Thanks Kazzer x You are right so much varying information and differences with the same drugs x I will try one way tomorrow and the other the next day.

Love to all
Jen x

[JenJen]

Thanks Hazel, Janey, Em and El x
I think I will go for 7ish with my brekkie and 1ish with my lunch or if I wake up early (if I ever sleep im bloomin still boucing around like a tigger) I may do 6 and 12
will pass on your hellos to the November ladies xx

[Caffy]

Hi Jen, well done, 1 down. Re steroids I have to take them for 2 days after chemo, I take 2 after breakfast and 2 mid afternoon - 4ish. They don't seem to have much effect on me - flushed cheeks but no hyperactivity. Though I was awake quite early on the 2 days this time which might have been connected. Certainly haven't had the energy to do any housework, when on or off the steroids. Luckily my husband is just about keeping on top of it, his standards are way lower than mine but I am managing to bite my tongue and not criticise!!! Hope you have a good night. Chris x

[Ele J]

Hi all - my instructions are to take all 4 desamethasone with breakfast, for the three days post-chemo (so same as Ruth/Peggycat). but even taking them all together I've never felt hyper, so sadly no cleaning done in this house (well, not by me anyway). Weird how much these things vary between us isn't it?

Well done for getting through your first chemo Jen. Hope everyone else is doing ok today.

I have my third chemo on Weds...wondering what delights this cycle will bring! But after that I only have one more so will hopefully be done by Christmas (sorry to all of you who have longer to go). X

[Rob em]

Hi Jen

I have to take two twice a day, and the nurses say at breakfast and lunchtime to avoid sleep with issues.

Give our love to all the November ladies. Xxx

[HazelBarney]

Jen, same as Jayne, I take two after breakfast and two after lunch to try to reduce impact on sleep.

Hazel xx

[Jayneyb69]

Hi Jen, with the FEC, I have Dexamethasone to take for 3 days after chemo, I have 4 tablets to take twice a day, my oncologist said don't take the second lot much later than lunchtime as it can effect your sleep, so I have 2 when I wake and 2 with my lunch at 12.30. Hope this helps x

[Kazzer52]

Hi Jen, I have to start taking steroids the day before my chemo. I have to take 4 2mg tablets twice a day for 3 days. I usually get up take my anti sickness meds, have breakfast and then take the steroids. I then take the second dose about 5pm but I'm still awake half the night. Take them as early as possible but please remember not to take them on an empty stomach. It's amazing how the advice differs from hospital to hospital, I've been told I can take paracetamol for pain relief but others told not to take them. If in doubt about anything give the hospital a call, I'm lucky as we have a 24/7 number I can phone for advice. I hope your treatment goes smoothly. Karen X 

[JenJen]

Well thats a bonus anyway! You can come do mine I bloomin hate cleaning, have even tired the C word as an excuse to get a cleaner but that didnt work because the booklet from the hospital said moderate cleaning and tidying counted towards my daily exercise x I am sure I have seen other ladies saying they take at same time too so maybe your unit does things different x

[PeggyCat]

Jen, I think I'm going to check with the unit next time I'm in to make sure I should be taking mine all at once!  Perhaps I've been doing it wrong the last two times. Anyway, the upside is that in the few days after chemo I actually have loads of energy and my house has never been cleaner. xx

[JenJen]

Thanks Ruth im on 2mg and I have 4 to last the 2 days, I think im still wired from the IV ones today my session finished at 11:00 and if I had a gym membership even unfit me would have been trying to use it I am so hyper. They deffo said to space out so but didnt say a time but I really wont be taking at 6pm

Thanks for answering x

[PeggyCat]

Hi Jen,

Welcome to October. Glad you have found our ramblings helpful.

Not sure that I'm going to be much help here because my instructions from the chemo unit are just to take the four tablets "in the morning" for the three days after my chemo. I'm on dexamethasone but unfortuantely can't remember what dosage is per tablet. I guess some people have fewer tablets at a higher dosage. I've always taken them around 9.30am. I tend to have an anti-sickness when I wake, breakfast half an hour later then the steriods just after that. I've been very fortunate that I've not had any real sleeping problems with them. I'd say the earlier you can take them the better but that's going on my own experience. I have read some people say they have been told to space their dose out over several hours but that's not the case for me.

Good luck and hope you get through tonight okay. You sound pretty perky!

Ruth

[JenJen]

Hi Ladies x

I am from the November thread I had my first Chemo today x I have already met some of you elsewhere on the forum so I know you are lovely and helpful

Can I ask what is the best time to take the 2 steroids I have to take tomorrow , the pack just says before 6pm but I have read somewhere that some people find even that too late for settling down to bed so I thought I would ask, I was thinking brekkie around 9:30 and 4:30ish would that be OK. I have Dexamethasone

Hope everyone is as well as can be and big hugs to those that need them. I have been reading all your posts and they really helped me psych myself up so thankyou x

Jen x

[Nikki3588]

My picc line was very last minute Jayne. Saw the oncology nurse on Monday, received a phone call Wednesday afternoon telling me I was having a picc line on Thursday afternoon and chemo had been moved to Friday. I've got everything crossed for you hun.

Big hugs, Nikki xx

[Jayneyb69]

I did ring the unit and said they will discuss at my next onc appointment next Tuesday, but that is only 2 days before FEC3, so it looks like I'm going to have to suffer again next week, whilst they struggle to get a vein, already stressing.

Hope you are all having a good day and Audrey hope you are able to come to a decision without too much stress about your hair, it's very difficult, I was adamant about what I was going to do ( and I did do it), which was shave it off as soon as it started coming in handfuls, and I thought I would be fine about it, but on the morning the clippers came out I did shed a few tears ( I had long blonde hair which was one of my best features). Now it does feel much better, the sore head went straight away, and I wasn't forever picking hairs out of everything. Don't get me wrong, when I look in the mirror I do sometimes feel a little sad, because it isn't me looking back, but it will grow back, I'm already planning my new pixie cut for when I go to Portugal at the beginning of June.

Jayne x

[Nikki3588]

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

[Audg]

Hi again

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

audrey x

[Rosiebubbles]

Welcome Audrey

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. 

Hope tomorrow goes well xx

[Rob em]

Hi Audrey and welcome.

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

xx

[HazelBarney]

Audrey, my friend who is a hairdresser/wig consultant told me to just carry on washing it as I would normally. I've had 3 cycles, 4th tomorrow and is still have some hair so washing regularly hasn't speeded up the shedding process.

Also I rinse it off in cool water, don't know it that has helped but have heard that heat ie hairdryer should be avoided.

My advice would be to go with the flow, you will know when you feel ready to cut it off, I still haven't reached that point!

Hazel xx

[Kazzer52]

Hi Audrey, I'm not going to be much help regards your hair as i had to shave mine off at day 19 but I know some people have used dry shampoo to keep it looking fresh rather than washing it, I think most people fear washing it and it coming out. I take my hat off to you for continuing to work, unfortunately my chemo brain means I wouldn't be abe to do my job properly and I'm too knackered. We have a Facebook page for October 2015 starters which is really good for looking at photos at how we've dealt with hair loss and asking advice. There is also another Facebook group called Breast Cancer Buddies uk which is great for advice.  Karen x

[Audg]

Hi Ladies

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 ? 

Thanks 

Audrey

[PeggyCat]

Hello everyone.

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

[Rob em]

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 D.

[Rosiebubbles]

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

[riversidedawn]

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

[wiffle]

hi i was on earlier as woke up and just couldn't go on with Chemo its hard and I really feel like you do, its lonely even when you have people around you. So its not easy for me to say be strong as I don't feel like it at the moment, but we need to go on and finish this awful bloody journey to try and have the rest of our lives infront of us xxx Tons of us awake at the stupid lonely hours feeling like rubbish, wish i had a silly o clock hotline.xx

[Jayneyb69]

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.

love to you all xxx

[jojo2]

Hi Janey. Totally crap isn't it? I have been feeling good the past few days and although I know the first 10 days were awful for me after chemo I actually can't remember how bad it was. Think it's my body's way of coping and moving forward. Think it was days 5-7 when I thought 'I can't do this'. I totally convinced myself that my family didn't care about me!! Also remember thinking if I don't wake up tomorrow I don't even care. 

I truly believe it's the chemo screwing with our thoughts/emotions - think its a SE no one told us about. Keep posting good and bad days and we will all try to be there for each other. 

Sometimes I think we 'October ladies' try to sound too upbeat (me included). Dip into septembers forum sometime xxx

[PeggyCat]

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.

Here's to us all feeling better very soon. xxxx

[Kazzer52]

Janey I'm sorry your having a rough time. I had 3 really bad days this week but woke up this morning feeling pretty 'normal' so hopefully you will pick up again very soon. We are on such an emotional roller coaster ride right now. Please remember it's ok to have bad days. My poor hubby bears the brunt of my moods and sometimes I can't help snapping at him and telling him he's no idea how bad I feel, sometimes I do wonder why he doesn't walk out when I'm been such a cow. We are all here for each other anytime, without this thread and our FB page I think I'd crack totally. Sending big hugs to you all amazing ladies xxxx

[Caffy]

Sending a hug to Janey, it's just so horrible. But it WILL get better. During last week I thought on a few occasions I couldn't continue, but now, just a coule of days later I'm feeling better, and I think, ok I CAN do this. I like Savlon or Vaseline for sore bottoms and canesten cream helps for Thrush. Hope you have a bette day. Cx

[Rob em]

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'!!!!

That's my rant over.

Emma D

[SuzyEB]

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

[Jayneyb69]

Sorry, don't know why it posted twice!

[Jayneyb69]

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 

[Jayneyb69]

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 😩

[PeggyCat]

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.

xx

[Jules007]

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)

love be to all Julie

[Kazzer52]

Thank you for all your support. I'm starting to feel a bit better this afternoon.   Thankfully the flu like symptoms seem to be wearing off, not sure if they are caused by the T or the immune boosting injections or a combination of both. Think I'll talk to my oncologist at my mid review and see if there is anything they can do to help ease the s/e's as if they get worse each time I don't know how I'm going to cope. Thanks again, your support means so much xx

[Rob em]

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

[PeggyCat]

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

[Elaine]

Thank you for your support. My SEs don't seem as bad this time so far, just feeling tired. and a bit fuzzy and only slightly nauseous. Hope you are ok and enjoyed your bath.

Kazzer, I think it is good to rant and get it all off your chest! Look after yourself and I hope you feel better soon.

Hugs to all.

Elaine x