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June 2016 starters?

sharon james
Member

Re: June 2016 starters?

Emma111 this is exactly how I felt what is going to happen to me. I on day 4 of first FEC and can't say I have been feeling that good. But Im hoping I'll figure out what is the best way for me to look after myself during this based on what is happening to me. I was very sick the first 2 days, had to have injection on the bum for anti sickness but apart from nausea and low energy I'm doing "better" today. I think the hardest thing is normally when we are not feeling well we know it will be over in a couple of days and I find myself wondering when will I feel"great again". Stay stong and listen to you body.

Belle
Member

Re: June 2016 starters?

Hi Char & welcome,

 

Lovely to have you here even if the reason for us being here is a bit crap!  I'm day 12 first FEC today and celebrating the fact that I feel brilliant!!  I'm so excited πŸ™‚  So I promise it does get better.  My mouth is still a bit peculiar but only occasional things taste 'off' now.

 

B x

charbutton
Member

Re: June 2016 starters?

Hi everyone

 

I had my first FEC course on 16/06 and I'm really happy to have found this thread. It's reassured me that some of the things happening to me are sort of normal, or at least 'to be expected' as none of this is 'normal' is it??

 

I had a local wide excision plus anciliary node clearence in April. 5 nodes affected, plus microscopic cells in 2 more and cells in the vascular system. I had to have a CT scan (probably the most stressful experience of this whole thing because I had to drink so much water and they couldn't find a vein for the dye and i was convinced that i was going to wet myself in the scanner! The staff were v lovely while i sobbed at them for a few minutes). There seems to be no spread at this point. 

 

I'm due another 2 x FEC plus 3 x T then radiotherapy then Tamoxifen.

 

A few days into chemo and I've felt sicky, drained, lightheaded and my sense of taste has become a bit peculiar. Salt tastes have disappeared and today it seems like the sweet is on it's way out too. 

 

I did the cold cap. I found the cold fine but the tightness and heaviness of the cap was really uncomfortable. The first strands of hair have started to fall today. I think I'll try the cap again and see how it goes. I have already stockpiled an abundance of scarves to use if it doesn't work!

 

Anyway, I hope everyone's Monday goes OK.

 

Char

RosieFlower
Member

Re: June 2016 starters?

Hi Emma, you're not the only one to feel like you do believe me! I sailed through surgery, and think it only hit me the night before my first FEC which was 3 days ago. I cried so much in the morn, that I couldn't even say my name to the receptionist!! Upside of that was that they offered me counselling - which if you can tap into which will be a great help. It hasn't been as bad as I thought it would - restless nights, slightly drained and occ dull ache in tummy that a shed load of meds help with. Big hugs to you - you can do it xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi again,

 

below may help - go to your Profile settings - may be different if you are on a mobile device...

 

Private message 2.JPG

Hugs

Sue xxx

Anon16
Member

Re: June 2016 starters?

Technophobic - how do I do that?

Sue H-S
Community Champion

Re: June 2016 starters?

Hi Anon16 - it would be great if you could enable your Privat Message settings, so I can give you more details as to colleagues, bossed and work.

xxx

Belle
Member

Re: June 2016 starters?

Hey Taran,

 

I was a midwife too!  Nothing like going from staff to patient, is there?!

 

B x

Belle
Member

Re: June 2016 starters?

Morning Emma,

Yes, you can, you can have Lorazepam or something similar. Can you contact your team I tell them how you're feeling? You are definitely NOT the first person (and won't be the last) to feel this way. And you are NOT a wimp. None of us are. It is a scary time and feeling like you do is an entirely rational response to it.

Seriously, ring your team. You need some support from them with this. We are here too (PM me if it will help) but they need to be aware of how you're finding this.

Keep us posted,
B x
Taran
Member

Re: June 2016 starters?

Oh Emma, I'm sure loads of people feel the exact same way! I'm still in the "chemo starts next week which is ages away" stage, but I still have moments of panic wondering what side effects I'll get, whether I'll cope, if I'll be able to look after my children ok. I just want to get the 1st session done because I think sometimes the unknown is the worst. Try and remember that your own imagination is usually much worse than reality xx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi ladies,

 

here is the interloper from the May 9th thread........again, lol

 

Belle you look absolutely fabulous - you really rock that look!

 

As to work - it is a very individual decision and it will also very much depend on your side effects.

Belle is absolutely right, you do not have to - but unfortunately, like me - some of us simply have to.

I am now day 11 past 2nd FEC. Generally slim, fit and healthy lady, I am very lucky as not to suffer much from side effects - as long as I keep taking the tablets.....BUT......

The day of treatment - it may be best to take this off. I have my treatment at 14.00 on a Thursday, so have the afernoon off - I leave the treatment with a slightly buzzy head, which lasts for about 2hrs. Currently still able to drive home. Friday and Saturday - absolutely fine - thank you steroids!

Then, even after first cycle - it may get more challenging, as the blood counts start to drop and fatigue sets in. Sleep disturbance, need to nap when you can and possibly dizzyness from time to time.

During my first cycle I managed by mixing working from home and going out to see clients, even in the first week. week 2 and 3 were nearly as normal. However after the 2nd cycle - day 3-8 were much more challenging, as I was more dizzy than before and there were times I really could not drive, because of it. As these specific symptoms are cululative over the complete treatment cycle - I now understand why my oncologist said I should take the week after cycle 4 off...

We are now covered under the DDA (Disability Discrimination Act) for the rest of our lives. Your employer HAS TO accommodate your challenges.You might find info very helpful - which can be found via this link 

http://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/information-for-emplo...

Huge hugs to all

Sue xxx

Taran
Member

Re: June 2016 starters?

I admire everyone who is working through this!! I'm on maternity leave so haven't been at work at all during biopsy/diagnosis/treatment and don't plan on going back until it is all done. I work as a midwife though so I don't think I'd have been working even if I wasn't on mat leave at the moment.

Good luck today Judith, hope your appointment goes well xx
Emma111
Member

Re: June 2016 starters?

Morning, for the past week I've been able to say 'it's ok, don't start chemo til next week' but woken up with horrible realisation I can no longer say that ....... it's 48 hours time! I'm absolutely petrified; have just been sick and given myself terrible headache as can't stop crying. Just keep thinking I won't cope as well as everyone else on here seems to. Did any of you feel the slightest bit like this before starting?

In a way I keep thinking this is the end rather than the beginning of getting better as so scared. I'm starting FEC and petrified it's going to do such awful things to me; I still can't believe it's happening to me. Can I have something to 'relax' me when I go in (like I won't have enough drugs pumped in!!). Am I the only one who has ever been this petrified? I feel I'm a bit of a wimp, trying to get myself out of feeling like it, but how???😒x
Belle
Member

Re: June 2016 starters?

Thanks Judith,

 

I'm delighted you enjoyed my blog (https://gettingabreastofthesituation.wordpress.com if anyone else fancies it) - it's helped keep me sane.  If I can get it out of my head and onto the 'paper' then it usually stops it going round and round tormenting me.  Doesn't always work of course.  As for keeping it together while the house fell apart, not entirely sure I did, you should have seen the meltdowns πŸ˜‰ !!!

 

I craved cheese at one point too - how bizarre is that?!  

 

Hope all goes well this afternoon, keep us posted and we'll be here for you whatever.

 

B x

judith63
Member

Re: June 2016 starters?

Morning all,

 

Belle you look amazing!  I don't think I'll be brave enough to post that sort of photo when my time arrives.  I trundled my way through your blog yesterday, you are a very talented writer and had me in stitches several times.  How you kept it all together with house renovations too!!  Keep it up!

 

I've got through the first weekend with very little difficulty....had a mad craving for a cheese sandwich at 4am on Sunday, bit odd but easy to sort out!  Appt this afternoon to get results of sentinal node, bit nervous, but hoping for good news.  Will also ask about the white cell injections...

 

Have a good day everyone.

Judith63

Belle
Member

Re: June 2016 starters?

Morning Anon,

Good luck with today. I found the process ok, slightly surreal, but ok. In a weird way it was good to actually get on with it. Once you start, something is actively killing the cancer and that is a good thing. Hold on to that. My other tip is don't forget to breathe. I know that sounds stupid, but whenever I'm anxious (and trust me, I'm a right screwball!) I forget to, so now I make a conscious effort to focus on my breathing.

Right, back to your question about working. It depends on your circumstances and how you are. I cannot work because I work with food (and it's my, small but perfectly formed, company). People working with children or animals may be automatically signed off too. But there are plenty here who are working, either from necessity or choice. However, my understanding is that your boss cannot force you to work. I'm not sure of your rights in this situation but it might be worth giving the helpline number a call to ask them. Either way, your GP will sign you off if you need him too. I'm signed off for the duration and claiming contribution based Employment Support Allowance.

Sorry this is so long but hope it helps,
B x
ps Thanks to everyone for the lovely comments - Bubbles, I'm not sure what I'm going to do but I have to go out today so a decision will have to be made!
Millasmummy
Member

Re: June 2016 starters?

Hi Anon16, I have decided not to work in the first week at all then if I really feel up work a mixture of office and WFH the second and third week. I am in 2nd week now and feel fine, so am thinking of returning this week. But week 1 will be a no go.

Belle - you look Ab Fab! , I hope I have a beautiful head like yours underneath all of my hair! Xxx
Anon16
Member

Re: June 2016 starters?

Belle you look amazing. You all inspire me.

Slightly off current topic but can I ask if any of you going through chemo or even due to start are still working? Or working but reduced hours? I'm due to start chemo tomorrow but my boss kinda thinks I'll just be off tomorrow and think he's expecting me to work as normal. We left on and terms on Friday because I said he needed to take it seriously and if I wasn't well enough to work I wouldn't be working. Sounds bad but for my own sanity I'm thinking of taking some time away so I don't even have to think about work. I'm going in today but dreading it. Thanks x
Taran
Member

Re: June 2016 starters?

Belle you look amazing!! If I can carry it off like you I'll be one happy lady! Very much with you on the control freak thing. Is actually one of the reasons I've decided not to cold cap. Would rather be the one to decide it all goes, than let the cold cap decide how much gets to stay. Maybe a crazy logic but it works for me!!xx
AngeNut
Member

Re: June 2016 starters?

Oh Belle, bless ya!
What a brave attitude! X
AngeNut
Member

Re: June 2016 starters?

I'm loving my shorter cut!
I need to post but been busy seeing Lionel Ritchie tonight and having a birthday weekend.
I also want to do the beauty course - it sounds really good!
Bubbles62
Member

Re: June 2016 starters?

Hi Julie g I am also cold capping and shedding has started in earnest today, day 17.  Now I am in a dilemma whether or not to cold cap again on Friday (Fec 2) .  What have you decided to do this week ?

Bubbles x

Bubbles62
Member

Re: June 2016 starters?

Hi Belle, you look beautiful. I think you are very brave to do that but I know what you mean about being in control again as I am a fellow "control freak". Are you planning to wear your wig out and about soon?

Big hugs and good luck with the hair coverings Bubbles x

julie.galea
Member

Re: June 2016 starters?

Hi C. Thanks for that. I'm cold capping and was hoping not to have to bother with a wig but maybe I'm going to have to. I've tried scarves and they don't look good. Maybe with a bit of practice.

Belle. You look amazing. And you are brave. You are taking control and that is important.
Charissecarson
Member

Re: June 2016 starters?

Belle I was writing my message whilst you were posting yours so only just seen it. You look amazing, I hope I rock it like you!! πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»

Charissecarson
Member

Re: June 2016 starters?

Blimey Belle only day 11, that's really soon, poor you. I assume you've had your chop by now so hopefully it's gone ok and wasn't too upsetting. I've been out today and it was quite windy and I kept feeling hair falling down my back so don't think it will be long before I am following in your footsteps. Like the others ladies said, once it's gone it's one less thing to be concentrating on.

Julie my wig cost Β£210 but I think they range from like Β£70-over Β£500 with the more expensive ones being real hair. Also in terms of the wig, the type you want that has a more natural scalp is called mono filament and it means you can put a parting anywhere in the wig as it looks like scalp across the whole cap.

C xx
Belle
Member

Re: June 2016 starters?

You are all lovely, I don't think I'm brave at all.  It's just my way of taking control and I'll admit to being a control freak.  Again, it may be a postcode lottery thing, but I didn't have to pay anything for my wig.  I got a voucher from the hospital to take to a particular wig supplier and that was that.  I tried on all sorts of varying lengths but payment was never mentioned.

 

Anyway, here you go, the Slaphead Look as promised:

 

IMG_5274 2.jpg

 

Tomorrow I shall be experimenting with head coverings!

 

B x

Taran
Member

Re: June 2016 starters?

I had a voucher for Β£100 and had to put Β£90 towards the wig. They gave cheaper ones but I went for one with a scalp in to make it look more natural. You're really brave Belle. I hope I'm as strong as you the night I shave mine off. The hairdresser has offered to do it for free for me once I start losing, but I think I'd rather do it in the privacy of my own home xx
julie.galea
Member

Re: June 2016 starters?

I was given a wig voucher for Β£90 when I had my first chemo session and a list of local stores that can provide them,  I dont know how much wigs are but guessing you will have to put money towards, depending on the wig you choose.

Anon16
Member

Re: June 2016 starters?

Do you not get a free wig on the NHS?
julie.galea
Member

Re: June 2016 starters?

Hi all

Belle, you are brave,  I am cold capping but have found today when I washed my hair a few handfulls came out and my scalp has gone from being itchy to tender in places. 2nd session on Wednesday so will see what happens after that.  If it keeps coming out I will have to bite the bullet and go and buy a wig.

Good luck to all those starting this week and hope your SE's are few and go quickly xxx

 

 

Belle
Member

Re: June 2016 starters?

Thanks Taran πŸ™‚

 

If I'm feeling brave enough, I'll post a pic!  

 

B x

Taran
Member

Re: June 2016 starters?

Good luck Belle! Hopefully it will just be a relief when it's gone, although I'm paranoid about their weird head thing too!! Apparently I have a birthmark on my head in the exact same spot as my daughter's though so am quite interested to see that when the time comes!! Let us know how you get on xx
Belle
Member

Re: June 2016 starters?

Evening all,

 

Tonight my house is beginning to resemble the floor of a hair salon so on Day 11 of my first FEC the Great Shedding has begun in earnest.  My scalp is tingling, sore and almost electrified in sensitivity and I have had a dull headache for two days now.  It is time to take action.  So my friend is coming tonight with her clippers and shaving the lot off.  From now until chemo is over, I will be rocking the slap head look.  At least that's what I'm telling myself.  Slightly concerned I'm about to morph into my bald Dad which isn't such a good look on a 50 year old woman. Also slightly concerned that my head will turn out to be a really weird shape.  But pretty soon, all shall be revealed.

 

Wish me luck!

 

B x

Belle
Member

Re: June 2016 starters?

Hi Rosie (Anon16),

 

It'll be good to get it under your belt.  At least then you'll be on the way.  And you may be one of those that gets very few side effects.  

 

Are you all sorted?

 

B x

Anon16
Member

Re: June 2016 starters?

First chemo on Tuesday yikes. Rosie
Belle
Member

Re: June 2016 starters?

Hi Anon16 & welcome,

 

Have you already started chemo or are you about to?  Lot of support here, sorry your in this situation but glad to have you here.

 

B x

Anon16
Member

Re: June 2016 starters?

I'm joining here too - well thought I had so I'll try again lol
netti37
Member

Re: June 2016 starters?

Thanks for the tips about the eyebrows ladies. I'm sat here plucking them at the moment as they are a bit unruly at the best of times. How ironic (that's my word of the week). I've not brought a wig yet, or looked for head scarfs.....i can't bring myself to do it. I will have to, I just keep putting it off. I'm getting my nails painted tomorrow. I've never been a person who pampers myself much... Always kept my girls looking good. I might consider these " look good feel good" sessions. Might help things. Xx
Sissylw1980
Member

Re: June 2016 starters?

Hi Taran, I'm not sure if you can take a friend, I think you'd have to ask whoever arranges your local course. Regarding the injections, I though they were standard issue regardless of if you have children or not. I had 5 each time during fec and 7 each time during T xx
Taran
Member

Re: June 2016 starters?

Hi AngeNut, how are you finding the new hair? It's a lot easier in the mornings. Just wash and leave it and job done!! But I'm having some kind of phantom hair thing where I still feel like I need to take it down from being tied up by the end of the day. But obviously it's far too short to have been tied back like normal. Lol!!!

Sissylw, I've want to do one of the look good feel better courses. Can you take a friend with you? I feel like the hair is a lot easier to disguise than the eyebrows and lashes.

I've been told I'll have the injections too. I have 4 children so could be that, or could just be I'm lucky in the area I live. I just thought it was standard too but obviously not xx
Sissylw1980
Member

Re: June 2016 starters?

Hi all, just popping in from January thread. With eyebrows and lashes I found that I keep all of mine throughout the FEC part of the chemo. They started to thin out after chemo 5, which was my second docetaxel. Chemo finished 25th April and I'm left with around 10 lashes on each eye, I also have eyebrows, though they are thin and patchy.

I'd also recommend the look good feel better workshops to you all where you can get some tips regarding makeup as well as a bag containing lots of makeup and beauty goodies. It's also a nice to meet up and chat with other ladies. Good luck to you all starting this month xx
AngeNut
Member

Re: June 2016 starters?

Welcome, Taran.
I've just had my hair chopped too...
X
Belle
Member

Re: June 2016 starters?

I think the injections are a bit postcode lottery as well.  My area only seems to give them if you need them which I guess means unless you're admitted with crashing sepsis you're not likely to get them ... hey ho.  Glad I've not ended up with sepsis, but wouldn't mind something to boost the old white blood cells.  But I do agree, priority should be given to those of you with children - mine were NEVER able to stay out infection's way!

 

May your immune systems bounce back rapidly πŸ™‚

 

love,

B x

Millasmummy
Member

Re: June 2016 starters?

I have been having those injections Netti, I have children too. They gave me them to take home after first chemo. I had to put them in my tummy once a day. About 7 days worth. They give you a sharps bin to dispose of the used needles and then you return them to the hospital. It was difficult to do the first one myself but it got easier. Doesn't hurt just mind over matter xx
netti37
Member

Re: June 2016 starters?

I've not started yet Judith. Next Tues is my first. I have small children, so apparently ill have injections (at home) to boost my immunity. I'm think that's why as kids bring all kinds of germs home!! You've got me thinking now, thought it was routine. Xxx
judith63
Member

Re: June 2016 starters?

Hi Nettie37,

 

How has your first day gone?  Hope it was as good as mine...

 

Don't know anything about whiteblood cell injections?  It hasn't been mentioned - is it something that is cocktail specific?  Any ideas anyone?

 

Judith63

 

 

 

 

netti37
Member

Re: June 2016 starters?

Was it Sue. I've read many of your posts...probably all of them. You have many words of positivity and encouragement. Despite that you are going through it yourself. Thank you. Xx Good to hear about the eye hair. Great news, you have your appetite too. big hugs to you too. Xxx
Sue H-S
Community Champion

Re: June 2016 starters?

Hi Netti37,

 

Lol, it was acually me, who wrote that on one of my posts - So glad I can make people laugh Smiley Very Happy and remind them, that laugher is very good medicine, especially when in reality there is not much to laugh about. Little things, hey?

 

As to eyebrows and lashes - none gone yet, and my chemo nurse said, if might just be that I might keep them, perhaps thinner, but..... Time will tell.

Day 8 after 2nd FEC - energy returning, feeling really well and am on a See food - Eat diet Smiley LOL

 

Hugs

Sue xx

netti37
Member

Re: June 2016 starters?

Sue... Sorry but that has made be laugh. Your right about humor ... These past few weeks, I forgot what laughing was. That's another tip ill definitely remember xx
C, I hope your feeling ok. I read somewhere that for every hair lost, a 'c' cell has been zapped and gone. I have a short black "afro" hair, its very thick at the moment. Will have a trim on Monday before I start. Looking at myself in the mirror today and trying to imagine my self bald with no eyebrows n lashes. Oh my goodness...will not be a good look but must be positive about it.
Judith, glad to hear your feeling ok after your first one. Are you taking the injections to boost your white blood cells?? Hopefully you will continue to feel ok. Xx