June 2015

[Sar41]

Lisa, only just seen this and hope you're feeling a little bit better and you rang the helpline. Just talking to don't know helps so much. One of the things I've learnt this year is that there's nothing wrong with asking for help when you need it and people are there to help. Big hugs xx

[Lucy_BCC]

Hi Lisa, I am sorry to read that you are feeling so low
As all of your friends on here have already said, our helpliners are here with support for you so please do feel free to call, lines are open until 5pm

9-5 weekdays
10-2 Sat
0808 800 6000

Take care
Lucy BCC

[kilimanjaro]

Hello Lisac1

I was just passing by and I saw your post and just couldn't head off without posting something to you.

Everything gets thrown into the melting pot - steroids, lack of sleep, the treatment itself, frustration...the list goes on - and there are days when it's just too much. I've had those ' Beam me up, Scotty' moments, just like you're having today. I've cried, and it's good to cry because it releases all that emotion rather than let it build up.

If I were you, I'd phone the helpline and tell them exactly how you are feeling right now. 

Take Care. x

[Tweasel]

Hi Lisa. So sorry to hear that you are having a bad day. I think we have all been there and sometimes it's good to let all those feelings out. I have turned the radio up in the car and yelled and cried quite a few times. Please call the helpline as Sandra suggested, or ask a good friend/family member to come round if you can. Sending you a big virtual hug xx

[san1952]

lisac ring the breast care help line on 0808 800 6000 they will talk to you and help you get through today we have all had days like this but you will get through it with help BIG HUGS Sandra

[vic55]

Lisa you on your own today? Call someone and get them to come see you if you are.

[Lisac1]

Ladies I'm looking for some help. Having a really bad day can't stop crying and making things worse by looking at happy holiday pics. I just want my happy life back, not coping at all today day 6 after chemo and I'm absolute wreck!!! Really don't think I'm gonna last the pace xxx

[vic55]

And Jacqui yup to the working, but my boss has been brilliant. When I feel okay, I pop in for a morning. I work in separate office to everyone else and do what I can. Work in recruitment, normally really stressful, but they couldn't have made it easier for me. Doing bits of admin, more about keeping me sane! Staying at home for four months would drive me bonkers.

[vic55]

Hi Jacqui, yup loss of appetite meant losing some too, but happy to! Get monitored each week so any big problems think will tackle it. Maybe ask docs next time you are in? Sat in hospital on 2nd FEC now. Oh and my charming cats left us a dead bird this morning.

[Terry123]

Hi Holly,

Yes, we could be twins and it would be nice to keep in touch as we go through this journey.

I didn't find cold cap too bad - the hospital said hardly anyone used it which made me more determind.

I am used to going to the gym regularly so I have decided to get one of the fitness advisors to give me a bit of advice about training during chemo.  Seeing them tomorrow at 10 am.

Take care.

Jacqui xx

[Terry123]

Good morning,

A beautiful morning in Scotland but probably not as hot as down south.  Got up this morning to find my cat had eaten the meringue nests.

The wig fitting was fine yesterday, it was only a 5 minute walk from home and took myself for a 99 ice cream afterwards.  It is called "Emily". 

My biggest battle at the moment is my appetite and seem to be losing a bit of weight.  How are others finding this?  Does your appetite get better as you go through the cycle? 

Plans for today a bit of weeding and watching Wimbledon.

Sorry so many questions, are any of you working during treatment?

Have a good day.

Jacqui xx 

[hopefulholly]

Hi Jacqui, I'm on the same chemo regimen as you and had my first cycle on 23rd June. We're almost chemo twins lol! I was diagnosed in April and have had 2 surgeries.

Like you, I've had minimal side effects so far, touch wood: nauseous but not sick (ginger nuts a lifesaver); constipation first week (suppositories and Movicol worked); sleeplessness due to steroids but fab energy boost; did have reaction to steroids (dexamethasone) - hot, red face, I was 'told off' for not contacting hospital about this. I did phone last night as I had diarrhoea (7 visits to loo) and was prescribed Loperamide with immediate results. 

I used cold cap but really struggled with it so not sure if I can use it for next cycle, I'll decide on the day. 

Did you get a wig? Let me know how that went. I cut my shoulder length hair into the same short style of a fabulous wig I bought with the NHS voucher. 

I've had to change hospitals for my 2nd cycle because it wasn't possible to get my bloods checked before Tuesday so my next chemo will be on Friday 17 July. I'm planning a weekend trip to Manchester from 10 to 12 July to see the divine Bette Midler in concert and plan on giving myself treats for the 3rd weeks of the cycles if I'm well enough. 

Keep in touch x

[NMT_1]

Love it! #nohairdontcare! It's certainly much cooler! Good luck with round 2, and welcome to the group terry123 😀 and good luck with the shave today sar x

[vic55]

Go for it! The falling out is worse then the shaving! After last few days in scarfs honestly feel good. #nohairdontcare!

[Sar41]

Thinking of you Vic. Would say it's another one down but I'm finding it really annoying when people say that at the mo! I'm day 16 and my hairs coming out all over the place. The big shaves booked for 3 30 and I think it'll be a relief (and a lot cooler). Wigs and scarves here I come!!!!

[vic55]

Right round 2 at 9.30. Hottest day of the year....thank god for air con!! Thrilling afternoon of ironing / napping and drinking tons of water!

[vic55]

Good luck with wig fitting terry, let us know name of wig....always entertaining!!

[June_BCC]

Hello  Terry123

Welcome to the forums. 
Just to let you know we have a helpline should you want any support or practical information, the free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes

June, moderator

[Terry123]

Good morning,

I have been lurching in the background since diagnosis late May 2015.  Started chemo on 24 June 2015 - 3 x FEC and 3 x T - if all goes to plan then last application should be 6 October 2015.  To-date side effects have been minimal.

Done the scalp cooling and going for wig fitting today.

It would be nice to share the next few months with others in the same boat.

Jacqui xx

[Terry123]

Good morning,

I have been lurching in the background for the last few weeks since diagnosis.  Chemo started on 24 June 2015 3 x Fec and 3 x T - so if all goes to plan last application should be by 6 October.   So far side effects have been minimal.  It would be nice to be able to share the next few months with others in the same boat.

Jacqui xx

[vic55]

2nd round for me on wed. Tiredness and couple of headaches but okay. Ladies if you haven't been given it ask for emend for anti sickness. My oncologist told me today he gets in trouble for prescribing it from day 1 but doesn't care as knows how good it is! Worked well for me on 1st cycle and happily got next set for wed. NMT re hair ditto, was relief to crack on. Kinda like my fuzzy head!

[NMT_1]

Well done vic! I felt much better after I'd got mine shaved and I even enjoyed seeing my 10 inch brain surgery scar properly for the fist time! I'm on round two day five and I'm exhausted, but I didn't sleep well last night so bath and early night for me. How is everyone else getting on? Any weird side effects?

[Sar41]

Poor you, feel your pain. Nothing worse than when you finally get to sleep waking up because you need a wee! I was exactly the same with the steroids so it was agreed I'd only take the morning dose. As I'd got the nausea under control they said I didn't need the second dose as it was only for anti sickness. Might be worth asking, tiredness makes everything so much harder. Hope you're feeling a bit better x

[Lisac1]

First weekend over after treatment on thurs, had a real bad day yesterday crying a lot with not slit of sleep since thurs. I have finished the steroids this afternoon so hoping that maybe tomorrow night will be full nights sleep. Still haven't washed my hair as to scared in case it comes out in clumps. Eating small and regular but really don't have an appetite at the moment, and drinking litres of water which seems to help lots only problem is the need for the toilet lol xx

[vic55]

That was another reason! I just had a word with myself when I realised I was getting to worried to touch it and get it wet in shower. Seeing friends for lunch today and family pre chemo on wed and just didn't want to be stressing about hair dropping out. I'm kinda fluffy now, honestly not as bad as I thought. More of a relief!

[Sar41]

Good for you girl, and for hubby for stepping up to the mark and doing it. Have you seen the weather forecast for this week? Just think you'll be lovely and cool whilst everyone else is sweating away under all their hair xx

[vic55]

Just did it. Was getting tons out today. Scared of getting in shower. Decided that was stupid and to just bite the bullet. No. 3 all over. Love hubby for doing it. And actually relieved to get it done.

[NMT_1]

Hi vic yeah my hair started coming out on day 15and I got it shaved on 20. Cycle two is done and I'm home from hospital.yey! I can't imagine having to stay away from my daughter for 24 hours, overnight was bad enough! Have a great weekend everyone, we are hoping to make it to the local farmers market tomorrow

[vic55]

However need to just get over myself, not being able to cuddle your kids must be tough Lindy. Will stop moaning about nail appt! Have lovely weekend ladies, hubby bday on Sunday, so taking him car racing tomorrow. Cannot wait 😊

[vic55]

Yup nurses had said okay for shellac, just had nail tech cancel on me due to insurance issues!! Found another one, just need the docs okay. Its really frustrating, if on the teeny tiny chance I got an infection, I wouldn't never blame her! Irony is nails would prob be fine, more likely to pick up a cold from her. Just stupid, people hear cancer / chemo and panic.

[sazza38]

I have shellac and been told they're okay - it's the cuticle pushing they tell you to avoid to stop infection.
It was acrylic they told me to avoid but their the reason I have shellac as my own nails are weak from having them!
I've taken to neon colours - the idea if my hair does go they'll be too busy staring at my nails! X

[Sar41]

God Lindy that must be hard. What winds me up as well is that we all get told different things. I had a bone scan and was told I was fine to pick up and cuddle the baby and Vic our chemo nurses have told me that gel nails might help protect my own from the chemo. Just get them soaked off properly and acrylics are a def no no. It's hard enough without all the conflicting advice. I'm trying to eat healthily but have been told this week that as I had a bit of diarrhoea after the chemo not to eat fibre and veg, go figure! On the plus side Warburtons White toastie bread with butter is lush Lol!
Have a good weekend ladies xxx

[lindy15]

I hear ya on the small things that upset you .

I live abroad and have had to organise wigs to be sent over to me, this is the second place I have been to having been let down by the first crowd, and they have just called me to say the wigs they ordered 'express'

on wednesday won't get there til monday. my sister is flying over tomorrow and was supposed to bring them with her.

they are now putting together alternatives which I have no faith in and just had a meltdown there.

it's soul destroying enough having to chat to someone about wigs and looking online trying to visualise yourself with them on, but then to be let down twice is just too much.

on the upside, I had a bone scan yesterday and couldn't go near my twins for 24 hrs.. those 24 hrs are nearly up !

Lindy x

[vic55]

Ahhh ok. Its just annoying that something nice and kinda a treat is a no. Also feel like a child having to get a doctors note to say I can have stuff done!!! Rant done. Finding I can cope with big stuff, but little things like this really grate.

[Codiesue]

Vic it could be due to risk of infection removing varnish/shellac, a lady off one of the threads was in hosp fro 5 days with infection in her finger from removing nail polish!! I had mine done just after last chemo thinking I should be bit better by the time in needs to come off. Sue xx

[vic55]

Ok, random query, in grand scheme of things not important, but has anyone been told you cant have nails done? Just had appt cancelled, as tech insurance doesn't cover me!! Its just nails, don't get the issue.

[Codiesue]

Good hope it is emend everyone says they are so much better, you will know if its them as you have to take it an hour before chemo then a lower dose for following 2 days. Good luck its bad enough having side effects so they should give you everything possible to ease them. Sue xx

[vic55]

Sorry ignore, just read it....so you kept hair fir 20 days??

[hopefulholly]

Hi Vic, thanks for reply. The redness has eased a lot now and my temperature as fine (35.5) so I'll wait and see how it goes for now but will mention it at my next appt. Thanks again.

[vic55]

I got emend for 1st cycle, worked really well. Onc said sickness was worse younger you are so they wanted to start me on something good. Reading this, thank god! NMT have you had 2nd cycle yet? Trying to work out when it will be head shave time....

[NMT_1]

He is giving me something different for my next round but I can't remember the name, if they don't work I'll ask him about them thank you 🙂

[Codiesue]

Hi NMT has your Onc given you emend anti sickness, they are expensive so most hospitals try and see how you cope with normal meds first. After my first FEC I was sick every hour for 13 hrs then a break of 4hrs and it started again. Once I took emend I was so much better with consequent sessions, still nauseous but hardley sick at all. Hope your feeling better soon. Sue xx

[NMT_1]

I had my head shaved on Tuesday because my hair was coming out so quickly, I've got various things from annabandana as well and have my wig for when I leave the house!

[NMT_1]

Hi all, I had round two yesterday and have ended up in hospital overnight because I couldn't keep any food in me at all yesterday! Please tell I'll feel better soon! Hated leaving my daughter, but I know it's for the best x

[vic55]

Hiya, think the E part of FEC can cause flushed face, but I was told it was straight away going in. Would ring your onc team holly to check. Is your temp normal?

[hopefulholly]

Hi ladies, I'm new to this thread as I'm a late June chemo starter, had my first chemo two days ago. I'm hoping someone can advise as I woke up yesterday with a bright red, hot face and neck, it looks and feels like sunburn. I think I've read about this somewhere on the site but can't find it now. Just wondering if this is 'normal' - if there is such a thing, and caused by the chemo drugs, steroids or combination of both?

[Sar41]

Give it a month before I go out and forget to put wig/hat on as well. Went for a curry the other week and was out the door before I remembered to put my boob in - that was before chemo brain as well!

[Sar41]

Thanks ladies. Agree tea cosy (or pirate is not a good look!). My husband has just shown me a website he found, Bold Beanies, they look nice as well. Also thinking big summer hat and mirrored aviators, don't even have to bother to paint eyelashes on then. Sazza I'm with you on being a hair type of gal but thinking like Vic, it's all dead cancer cells and thats got to be good.

[vic55]

Honestly they make me laugh everytime I go in! Sazza I know re the hair. I never wear hats. Literally never. Glad got wig, but I know I can't be bothered with that all the time, so just got to crack on. Every clump of hair out = dead cancer cells. Those little buggers have got to go!

[sazza38]

Vic55 we could start a new trend on tea cosy hats!! - some really nice headwear about but I'm just not wanting to wear any of it - I'm a hair kinda gal! X