July 2017

[Carole M]

MissenQuinn the Facebook group is Breast Cancer Care July 2017 Chemo starters

[feelthefear]

Morning ladies. I have to start the white blood cell/ marrow booster injections today. Is there a best time of day to take them? Or just whenever you build up the courage? X

[feelthefear]

Hi Annie. My hospital's suppliers were quite far away from where I live as well. To check them out it would of meant hubby taking another day off work to ferry me around. He's used most of his holiday's so far taking me to appointments. So I just thought as I'd heard such good things about the wig supplier near to where we live, it was worth just taking the plunge. He's charging just under 200. He says he receives discount, which he'll pass onto me. Really hoping I don't even need it with using a he cold cap. 🤞
Here I am wide awake before 5am again. Hoping it's just the steriods as they finish today. X

[Anniej]

Feelthefear, have you checked out the recommended suppliers though? It's a good £2-300 for a wig, so it might be worth a look to save that kind of dosh? X

[MissenQuinn]

AliOG I too started FEC on the 26th June so have joined this group as a newbie.
How do I look for the forum group on facebook?
All new and daunting..

[feelthefear]

Yeah, I was awake from 3am last night. That's probably got something to do with why we feel lightheaded. I don't start the injections till tomorrow. My hubby forgot to put them in the fridge last night. 😳 Apparently they're very very expensive and now mine need to be replaced. He's a senior microbiologist so knew better. He's so embarrassed. I think he also had chemo brain yesterday after sitting with me for five hours bless him. X

[LouiseW]

Hi FeeltheFear,

I'd heard there's a comedown from the steroids and I didn't sleep v well last night even though I was exhausted! I'm feeling a lot better now but have been dizzy. My coldcap was too tight and hurt more than the cold - I could barely speak and I think gave me a beaut headache. We'll try to adjust it better for next time 🙂

Have to go do my tummy injection in the next half hour so hoping to nail that (perhaps not the best word!)

All the best, 

LouiseW x

[feelthefear]

Hi Louise. How are you feeling after your first chemo? I had the first of my fec yesterday. I felt great last night, then felt like I'd been to a rave for a couple of hours this morning. Forgot to eat with one of the meds. Think that may have been to blame. I'm back on track now, just sooo hungry. Apparently we could feel a bit rotten for a couple of days once the steriods stop.
I'm ER+ and her2 negative. 7 nodes out of 26 involved. Grade 2. Mastectomy and lymph removal was may 2. X

[LouiseW]

Hi Carole

just sent a join request which I hope is ok?

I've actually joined Facebook to access the closed groups on the forums so complete newbie!

I'm TNBC, had WLE and clear nodes, and had my first chemo yesterday.

Thanks

LouiseW

[feelthefear]

Hi miss a. That's sounds like a pretty good list to me. However, if chemo is Friday I'd probably give the blading top up a miss as they take a week to heal. X

[feelthefear]

Hi Annie.
A particular hairdresser in boldon (tribeca) was highly recommended me to by numerous people so I had my heart set on having one of his wigs. I'm dreading having to wear one, and I'd heard his was more realistic. Unfortunately, gateshead will only allow you to use your voucher towards their two recommended suppliers.
Bc is like a money pit.
Angela. X

[Mishy18]

Hey Annie how are you doing now hope you are feeling better now xx

[Mishy18]

Well done feal the fear sounds like you have done really well today good on ya one down eh!!

[Anniej]

Feelthefear, I'm in the Newcastle Trust and was given a prescription for the full cost of any synthetic wig. Does your Trust not do similar? It's a bit much having to fork out that much with everything else we buy. Have you asked? X

[Missaconitum]

Hello all. I'm new to the site. I start my first round of chemo on Friday. EC and Taxol and Carboplatin. Have been reading up as much as possible on here to prepare. Had nails done in black shellac (I'm kinda Goth so dark nails are a normal look for me anyway 😂) and was planning to get hair cropped short at some point - now thinking might get it done on Thursday? Will be fasting beforehand and after too. Had one session of microblading on my eyebrows, wondering if I'll get away with having the second or not.
Got a soft toothbrush, alcohol free mouthwash, fruit tea, bottles of water etc on hand. Bag of books, crochet and notebooks to help with boredom, panadol to help with the brain freeze headache, blanket to keep me toasty and loads of small healthy snacks in case I need a nibble. Anything else I might need?? Thanks in advance!
Zara I'm at the Christie in Manchester too.

[feelthefear]

Hey everyone. Quick update on first session.
I feel over the moon I'm now on the road to the end of all of this. First the cold cap; much much easier than I'd anticipated. I took a 500 paracetamol about an hour beforehand. It was very cold for about 15 minutes, but nowhere near as bad as the brain freeze I used to get after eating too many ice lollies as a child. After that, you more or less forget it's on. In fact I started to think it had defrosted. I was shocked to find ice in my hair when they took it off.
As for the chemo, no problems at all with that. To be honest, I ate my way through it. I'd taken nuts, seeds, dried fruit and ginger biscuits. Once I'd made my way through those, I sent hubby to costa for a cappuccino and cake. Then I got home and had a decent size meal. They may need to increase my next dose if I continue eating at this rate. 😳
I feel absolutely great at the minute. I was pretty much expecting this though. Now I'm just waiting for the drugs to wear off and the side effects to kick in. 🤞🤞

[Mishy18]

Doggymum had my pre assessment yesterday starting Monday, had my Meltdown last night 😞 OK now though yeah I think we realised this it when it becomes real, still trying the cold cap although unsure but hair is getting cut tomorrow I spoke to a lovely woman in Maggie centre when I went to book the look food thing and she has been using it hair very thin and had to crop it she said her hair had been really thick but apparently it comes back a bit quicker afterwards x I will definitely try it but not going to beat myself up if it doesn't work and I stop x

Welcome to everyone else who has joined us x

[Doggymum]

Hi Everyone,

Off for my wig fitting this afternoon!  Not sure I will ever wear one as I think I will prefer the caps and hats you can buy which are quite funky!  I am very nervous, worried about how I will feel. Tomorrow is pre-chemo consult and then the first of my FEC on Friday morning. I think there may be a break down at some point, I have been fine up until now but think its starting to sink in that this is really happening. I will get through it but not looking forward to the journey. xx 

[Doggymum]

Thank you Carole, I have sent you a request to join the group. xx

[AliOG]

Hi ladies,

just popping over from the June thread. 

Feelthefear, good luck today. We'll be rooting for you. Just try and get through the first 15 minutes of the cold cap. it gets loads easier! 

Ive just sent a request to the FB group too. I started EC on June 26th so feel like I'm going through it at roughly the same time as you guys. Hope that's ok x

[MissenQuinn]

Hi all..
Thought I would join you in Julys group . I'm one chemo down of a course of 6 for FEC-T then radiotherapy.
I've decided not to drink alcohol during treatment although I was told I could, in fact tax has alcohol in it! Personal choice for diet and well being but cheers to anyone who fancies a tipple.
So far so good with side effects too touch wood.

[feelthefear]

Haha. Thanks for the tip Carole. I can imagine it would be quite a sight as well. Saying that, any pride I might have had left the room months ago. X

[Carole M]

Don't try to eat with cold cap on. Near impossible to chew with the chin strap!

[feelthefear]

Thanks mishy. I tried the cold cap for fit yesterday. My husband says I looked like I'd signed up for some extreme sports. 😀

[Mishy18]

Feel the fear bet your glad today is here I'm sure you will be fine you have a good outlook on things which I think we all need xx hope you cope with cold cap!!! Take care x

[feelthefear]

I like the way I've written alcoholic rather than alcohol. Haha, maybe I'm trying to send myself subliminal messages. Seriously: I'm not that bad. 😀 Hic.

[feelthefear]

P.s. Just in case there are any other boozers here. 😀
Chemo nurse says I should avoid alcoholic for 24 hours before then 48 hours after. Then, if I fancy a glass i should have it. Also advised me not to live in a bubble, just to be sensible. Fine to go out for meals and enjoy my usual takeaways. Even fine to enjoy a medium steak. Just not to do anything silly. This is good news to me as we're due to move house into somewhere that requires extensive updating and I won't even have a kitchen for quite a while. X

[feelthefear]

Thanks for your messages of support ladies. I'm just relieved the day has finally arrived. I haven't had much sleep thanks to the gallons of water I drank yesterday in preparation.
Chemo ward visit went well. Everyone I met was lovely. I'm definitely going to book in for a look good session. Chemo nurse says I can take someone with me, so I'll drag my mam along.
Good luck with the haircut mishy. I've had so many compliments since I had mine cut, I might decide to keep it short. I also had wig appointment yesterday in case cold cap doesn't work. Was advised to go for a synthetic with it being short. Apparently it's only if you go for a longer one that it's worth getting real hair. Still, another £200 to be spent on cancer. 😳

Welcome to the group Zara.
I'll let you all know how I get on today. X

[Carole M]

Good luck for tomorrow feel the fear, hope it all goes well for you. x

[Mishy18]

Hi Zahra I'm starting Monday from Newcastle soz not on Facebook but we can keep up with each other on here! I had surgery 18th May feel like I've been waiting for a lifetime to start I'm doing Fec T

Feel the fear good luck for tomorrow x hope you are feeling OK, I'm taking the hair plunge this Wed my hairdresser is coming to mine we'd eve booked in for 24th look good session at Maggies Centre it's great there every one made me feel so at ease today with lots of advice it's based in grounds of Freeman hospital NCC I strongly advise that you pay it a visit if you can x

Hope everyone is well xx big hugs ladies x stay strong x

[Zarazee]

Hi everyone,

  I ve just sent a join request to the facebook page, hope you got it.

 I start chemo on july 14th . I m having 3 cycles of EC and then doxetaxal (probably mis-spelt!) I had surgery on May 31st so am quite glad of the break as I m not fully out of pain from the surgery and not sure I d want to cope with chemo on top of that.

 Anyone else having EC? Or already started it? 

Anyone at Christies Manchester?

Zara

[feelthefear]

Hi mishy. I had my hair cut short as bc nurse said the lighter it is the better chance of keeping it. She also said I could have gel nails. They're mine though, not false. As for the booze, I've decided that if I feel like having the odd glass, I will. So much conflicting advice from oncologists, nurses etc. It's enough to make you dizzy without a drink. I'm off for an Italian meal in an hour. There'll definitely be a cpl of glasses with that. I'll just have to drink an extra litre of water tomorrow to flush it through before chemo Tuesday. I searched alcohol on these forums and it seems a lot of women continue to drink. I'm not going to go mad, but it'll be great if I can still enjoy the odd glass.

[Mishy18]

Ah right I have pre assessment tomorrow so I will ask chemo nurse first read the nails, I have shoulder length very thick course wavy hair and wasn't sure whether I should get it cut I'm worried about the weight of it making hair loss worse and keeping it tidy, all my family are saying to leave it, I'm sure they think because I am having cold cap I won't lose any!!! I think they are just trying to make me feel better but I would rather be prepared properly x

[Carole M]

Mishy I had my shoulder length bob cut to shortish layered style before cold cap.
Not sure if you can have gel nails. They say no false nails. I've painted mine black as apparently this protects nails from UV which can make them drop off x

[Mishy18]

The last post made no sense thanks to predicted text!! Did you coldcappers cut your hair short before you started, wish I had thought to have eyebrows bladed first before I started, dredding that look hahaha just as well my sons GF is really good at doing brows she says there's some really good eyebrow tbings out atm think I might get my nails gelled before though x

[Mishy18]

Week my onc doc told me I shouldn't drink alcohol through it!! Haha my breast nurse told me bout the look good thing so I booked it when at my app as maggies where they run it is in freeman hospital grounds, I will re arrange it for another time they are supposed to be really good show u how to do eyebrows liner to enhance eyes etc! Hey welcome too Karen sorry about your recent diagnosis, it's horrible when you first find out, but it does get better once you get treatment plan, there are quite a few Triple Negative in the July thread x I was other way round to you Karen surgery first starting chemo on 10th x I'm TN too x

[feelthefear]

Really? That sounds promising. I do like a glass of wine. 🤞🍷

[Carole M]

Feel the fear
You're allowed to drink a little through chemo x

[feelthefear]

Thanks for the link Rachael. Good you're feeling better. I'm a little bit jaded myself this morning and I'm old enough to know better. 😀
I think the thought of maybe not drinking for 18 weeks over chemo spurred me on to over do it a bit yesterday.

[Carole M]

Rachael I'm day 3 and feeling much the same but my temperature keeps dropping a bit low.

[Paddy07]

Morning,

I'm booked on to a 'look good, feel better' session on Tuesday as my breast canncer care nurse really recommended it to me. This is the website: www.lookgoodfeelbetter.co.uk 

Day 3 of chemo and feeling better than I thought but very lacking in energy and a bit headachey (perhaps not helped by teenage daughter no. 2 arriving home a bit the worse for wear this morning from a party)!

Hope everyone has a good day.

Rachael x

[feelthefear]

Hi mishy. I've never heard of a look good feel good day. Sounds nice though. 😀
Hi Karen. Welcome to group. Hopefully you'll get dates for your treatment plan soon. I remember how awful the waiting is. X

[KarenM2810]

Hi just found this thread after reading about it on another thread - hope you don't mind! I'm recently diagnosed triple negative - chemo before op - 8 cycles of fec-t, 4 of each - no official start date just yet but expected to be in the next couple of weeks x hope to find the Facebook group & join x

[Perrie]

Oops don't worry I've found it!!!! Join request sent 🙂

[Perrie]

Thanks for doing that Carole, I've searched but I can't find it, can you copy the link and post it on here? x

[Carole M]

Have now set up a closed face book group called Breast cancer care July 2017 chemo starters

[Carole M]

Hi everyone,

hope this doesn't create more confusion, but as promised I have started a Facebook group called Breast cancer care July 2017 chemo starters.  It is a closed group, so only those n the group will be able to see your posts. 

Certainly I hope this thread continues, but personally I find it easier to post and reply or add photos to facebook.

please ask if you struggle to join or find the FB group.  I'm not that techie so hope I've set it up right.  The cover photo is of pink roses!

[Mishy18]

Me too feel the fear I'm hovering too!, think it would be less confusing if I just stay here from now on!!! It is July after all hahaha xxx although I do also like to see how some of the other ladies have been getting on from when I was lurking around when first diagnosed!! Have you been to enrol in a look good feel good yet? I have but need to cancel as it's same day of first chemo when I was booked on I thought I would be ready for round two!!!!

[Mishy18]

I'm not as scared of the cold cap since you filled us in thanks Carole! Doggy mum sorry you have had a recurrence x we can all support each other through the treatment I start on the 10th feel like I've been waiting ages so can't wait to crack on and get it done hopefully the weather will stay like this for a few more days x hope you feeling well today Carole x

[feelthefear]

Doogymum it's rubbish that you've had a recurrence. However, you've fought this before and you'll do it again. I imagine twenty years ago you would feel a lot more isolated without things like this forum. Cancer can be a very lonely thing as we can tend to keep a lot of our feelings/ fears from our families. At least here, we can say whatever we like without the fear of upsetting people.
Thanks for the update Carole. Great that you took us through the cold capping process. I hope I cope as well as you.
To everyone; I'm getting a bit confused about where our group is. I'm currently hovering around three separate threads. 🤔😀