Chemo JAN 2017

[Wtp2016]

Yay Mooney!! Are you on FB already? If so, send me a private message with your real name and what your profile pic looks like and I'll send you a group invite. It's a secret group so no one will we you're on it other than the teddies. If you're not on FB, set up an account using a new email address if you want to keep your profile off the radar of friends and family and be sure to check your privacy settings, then send me your profile name...
Good luck and let us know if you get into any difficulties. Great to hear from you! Xxx

[RobinJ]

Welcome back Mooney in every sense! Hope to see you on FB soon. Sorry to hear about the lymphedema - how annoying. Robin x

[Blue2]

Hello Mooney! Nice to hear from you! Do join us on Facebook and tell us of your adventures these last few months. Theres enough of us there for a great party, though we are sadly still missing a few warriors - beedot....nickyh....and a couple of others.

[Mooney]

😚😚😚

[Slowski]

Mooney, like Scotty said , its fab to hear from you, we have been hoping you would come back to us on FB!

[Scotty66]

So lovely to hear from you. It's beyond my technological capabilities so I'll get the others on to it!

[Mooney]

Morning lovely friends!
Have been absent a while, travelling for 3 months in between houses. Would love to join the new Facebook group if you will have me! How do I do that?
Unfortunately I have lymphodema which is a bit of a bxxxxr.But you know what - I am still here and feeling good!
Hope you are all progressing well.Love and Hugs
Mooney
😎

[RobinJ]

Hi Kan. It sounds as if you have had a tough time. You are very welcome to this thread which has been amazingly supportive to everyone on it since January when we all started chemo. You may also get some helpful advice from the March starters thread since you started chemo in March so will be going through similar things to all of them. This thread isn't as active as it used to be because recently one of our clever members started an FB secret group and most of us have migrated there. You are very welcome to join us on it. Just let me know and I will add you. I'm glad you have found the forum - it's never too late to get some much needed support, advice and solidarity. Good luck. R x

[Kan]

Hi all,

this is the first time I have read any of these threads, i wish I had joined this before now.

I was diagnosed in Jan, had 2 wide excisions and still no clear margin, started chem0 in March, finished on 3rd July and due a double mastectomy end of Aug.

I had 3 EC and 3 docetaxol. I have peripheral neuropathy, swollen ankles, extremely swollen eyes which are nearly closed first thing in the morning - has anyone else had this?

There was a post about looking down and getting an electric shock in the feet - I get this and thought I was going bonkers!

I feel better reading all of this and I think my expectations are have been way too high, after 3/4 weeks I expected to be myself and all side effects gone. I havent lost any nails but they are very tender and it sounds as though this can still be a possibility.

As I said, I wish I had joined this forum at the beginning

xxx

[RobinJ]

Hi Beedot. Hope you get on FB soon. I think if you just join and then ignore all those friend suggestions, that will be ok. No-one knows you're there unless you tell them! But listen to the others as they probably know how it works better than I do. I've been to the Haven for nutrition advice and I've got counselling and massages to come. It's lovely there isn't it? Perhaps we should meet up! Glad you've finished rads and hope you're feeling ok. R x

[Beedot]

Hi all!

I am still here, I just haven't sorted out FB yet - I had a scare when I set up an account and it immediately started presenting me with dozens of my family, friends and work colleagues. I panicked and logged out quick!

Blue, Suze and Wtp have been giving me FB tips and I will try again.

I finished RT a couple of weeks ago and I have been enjoying the new found freedom of no appointments for a while.

I did a Lymphoedema Awareness course at the Haven, it was really useful and informative, I would recommend going to one of the centres if you are near one, they provide all sorts of help. I attach a link to the page where you can find the daily exercises, aimed at trying to avoid Lymphoedema.

I also had to buy a new handbag with wider straps - following medical advice obviously!

https://www.breastcancerhaven.org.uk/Pages/Category/haven-at-home?Take=18

I hope everyone is doing OK?

hugs to all, Beedot x 

[RobinJ]

I'm still receiving notifications from this page so I'm happy to come on here and chat to anyone who wants to stay here and not move to FB. I do love our FB group though! I feel like I've suddenly got all these lovely new friends! Hope everyone has a good weekend. R x

[Slowski]

Morning! Be great to get Mooney and Beedot and any others to join our FB group. I've never been on FB before but its ok to join just our group.

[lighthouse07]

Morning - is there anyone out there?! Just popping in to say hi, hope everyone is doing okay? X

[Blue2]

Beedot! Or should I say Betty/Ethel?!! Where are you? X

[Blue2]

I'm amazing myself egg with my new found Facebook skills! Who knew?!!

[EggG]

Whew - it turns out the person I thought I accidentally friended was in fact Scotty. Thank goodness! I'm still getting to grips with FB and just worked out there are a whole pile of comments that I haven't seen. I will work it out eventually!!

[RobinJ]

Ebim and Jackie. Have a great meet up in Spain and raise a glass to us all. It's lovely to think of teddies meeting in real life! Post a photo. By the way, I'm London based and would love to meet up with any of you who live near. R x

[ebim]

hi Jackie, it would have been exciting to be someone completely different with a new name! Just one small problem, how do I access the new site?? Xx

[Jackie1952]

Ebim - oh you do make me laugh.

Your Facebook name is your real name...........Evelyn R.

See you Tuesday. xx

[ebim]

OMG I have been off line for a week and missed so many pages and its seems like chaos has set in!!

names being changed, can we have a list of who was who on the forum and who is who on FB cos I am confused.com!!

missed you all soo much and only got wifi in a cafe for a coffee so would be here for dinner catching up since last Wednesday!  

I have tried to join FB, but the picture has jammed (more chaos) half of a fantastic teddy bear and half of Robin (real name, FB name or otherwise) can't see below that.

laughing here at it all, seriously hope all is ok, much love and hugs to all.

ebimx.....what's my new FB name ???

[Jackie1952]

No Judy Egg.
You have done it correctly and I've added you to the group.
Blue is also there.
Slowski I can't find your request.
Beedot - the same.
Xxxx
Can you send it again? Xxx

[EggG]

Well I've joined and friended jackie but think I may have friended someone else inadvertently. Eek. Knew I was hopeless at this! Do I unfriend them now so they don't think I'm a total weirdo friending them?

[Blue2]

Scotty says Ethel.....!!

[Blue2]

Beedot.....Esther says Betty for you!!!

[Blue2]

Slowski, any suggestions for a name for beedot?!!!

[Slowski]

I think I have joined and have sent Jackie a friend request but am a bit clueless about whether its worked or not....

[Beedot]

And me, who can I be today?

[Blue2]

Yeah!
Come on slowski.......Judy egg, you think of a name for slowski!!?

[Blue2]

Egg.... Or should I say Judy?!!? I reactivated an old account that I've never posted with or used apart from when I was a member of slimming world years ago! It can be done!

[EggG]

I'm now Judy Egg. Jackie I sent you a friend's request I think. I am a tech dinosaur so I don't know if it has worked

[EggG]

Ooooh - I'm intrigued to join under a fake name. Didn't know you could do that. Was on FB years ago but deactivated it so not sure if it will let me join again. Let me have a go now - Judy it is Blue!!!

[Scotty66]

You can use a fake name. Everything that we say to each other will be done in a closed group so only we can read it. That's what convinced me to join. My RL friends are not privy to it!

[Blue2]

I've heard of breast mice Robin. I hope that's what it is. I'll join you in the scanxiety - I'm awaiting a date for CT. X

[Slowski]

I really want to join the fb group but like Blue don't want anyone but you lot to find me....any advice anyone on how to join?

Back at work was great but would like a few days off to recover! They were all great and indeed have been massively supportive since this all kicked off in the autumn. .

[Blue2]

I'm Joan! And I'm blank!!!!! Lol! Jackie accepted my friend request so does that mean I'm it.......??!!!! This is all very exciting! Egg, you should join under a fake name too!! I don't want to risk any RL friends seeing things (ie my life for this year!) hence the fake name! I see you egg as..........a Judy!!!!

[Jackie1952]

I got you Blue. Well done.
I'll add you to the group.
Xxx

[RobinJ]

It's great to have the fb page! Blue what's your slightly fake name so I can spot you? I will keep posting on here though as I know not everyone can join the fb group.
I saw a nurse and doctor today and they said I will need an ultrasound for new lump. More scanxiety. It is a very mobile little lump though so may be something called a breast mouse. Never heard of them before but they are benign so I'm hoping that's what it is. I'm just so fed up because we're going on holiday next week and you know how hard it is to relax when you have anything like this nagging away at you.
Hope everyone is doing well this week. It's great you're getting over surgery so well Wtp. And well done on return to work Slowski.
R x

[Blue2]

I just accessed your Facebook page via your link and clicked add friend..?!! Argh! Was that right? I'm a technophobe!!

[Blue2]

OK......I have joined Facebook under a slightly fake name (so nobody else can find me!!), but haven't the foggiest what to do. How do I send a friend request to Jackie (as she's put some details in her msg) so I can join the Facebook warrior group?!!!

[Blue2]

Wow slowski, well done on your return to work! I bet it's hard going back after so long? I've only been off since April but I still feel quite nervous about going back!
X

[EggG]

Well done slowski. Not surprised you are tired! Does it feel good though to be back at work?

[Scotty66]

Well done Slowski!
Herceptin was fine thankfully 😅

[Slowski]

First day back at work today after 8 months - am so shattered!

Hope everyone's doing ok. Jackie well done on completing rads and all that travelling.

Scotty hope Herceptin was ok for you ?

[EggG]

Hi Wtp - I also thought the biopsy before op was weird but apparently my surgeon likes to do it so she can decide how much tissue to take? I think she is very careful from what I've heard so it doesn't seem to be normal procedure. I still can't get my head around it as surely surgeon tries to takes wide margins anyway if they can? And I've already told her I'm not at all worried about cosmetic appearance (it was close to cleavage so she was worrried initially about how it would look) - I'm well past the days of low cut tops!!! Anyway. Just want op to be over and done with now!

[Wtp2016]

Good luck for your biopsy results Egg - let us know how it goes! Are they just being cautious as you're hoping for a lumpectomy? Leaking roof!! Nooo!!! Just what you need 😩 Enjoy your wknd away xxx

[EggG]

Wtp glad your recovery is going well.
Blue I am impressed that you are using a hairdryer!
The only place I need a hairdryer for is my bedroom ceiling - our roof started leaking today in the sudden downpour! That's all I need to be dealing with now!!
Am hoping to get away for a weekend this weekend before seeing surgeon on Tuesday to get results of biopsy. I have a very bruised boob and a gigantic lump which I am guessing is where I have bled inside. Not pleasant!
Robin - I know what you mean about the anxiety. I find I am anxious about all sorts of things now which I wouldn't have gotten worried about before.
I'm not on FB so please do all keep posting and looking in on here!
Egg x

[Wtp2016]

Hi everyone!

We have a FB group up and running now - pm me, Scotty, Fen Hen or Jackie for details - we need to add you as friends on FB and then can add to the group and make us all admins...

Blue and others not on FB, we will continue to support on here too, of course 🙂

I'm doing ok post-op thank you! in fact, recovery has been much better than I had anticipated! Just got that dreaded report to come on the 24th... xxx

[Blue2]

Robin, I was just using my hair dryer for the first time in 8 months and thought of you and was going to ask how your hair was growing now! And then I saw your post. I'm sorry about your current anxiety - this really is a horrific experience. I hope you are able to be reassured by the nurse later and your burns are improving?
Well done on the rad grad Jackie! Wish I was there with you and Ebim. Would love to see some teddies on tour photos.
Hope everyone else is ok. How are you post op wtp?
X

[RobinJ]

Well done Jackie on finishing. You must be relieved that long journey is over.
On the subject of nails. All of my fingernails eventually fell off. When I say fell off I mean they just became weak and soft and tore off about half way down. But not painful. Then stayed liked that for ages! Now I think they are very slowly growing again. White wavy ridgey lines on them. It has amazed me how many things you need fingernails to do! I never realised before.
Last night my left big toe nail just fell off! Don't know where - haven't found it in the house and didn't feel it go. My left big toe is the only bit which has experienced significant numbness. Still is.
Hair on head quite thick but very short still. Full on baby hedgehog look now.
Still experiencing anxiety. Made more so last night by finding a little lump in the breast which has been treated. Will get the radiotherapy nurse to take a look today when I go for burn check up. It feels movable like a little cyst. But this is my reconstructed breast so I don't know what's going on there. So tired of all this anxiety.
Looking forward to our fb group. R x