May 2017 chemo starters

[AnnieA]

I'm not feeling too bad katie thank you. Pretty much the same as round 1 although I probably don't feel as hungry as I did first time round. Starting the injections today so expecting to ache for the next couple of days. But all very do able 💪. How are you? Xx

[treehouse]

Ladies is that the half way mark for you? 😊

[katie11]

Ha ha Mai7 ! Good luck today! Xx

[Mai7]

Rosie, I'm round three today at 1.30! Today we can be chemo twins! Hope it goes well for you. I like to call it what the FEC! 🙊 X

[WolfEE]

Round 3 Rosie - good luck hope 2 hear tonight is was smooth and event free. Xxx

[treehouse]

Thanks MJK. I vaguely remember something like that. Just so much info and that was the least of my worries. I will just have to get a lighter duvet. 😁 eyes have stopped leaking today so back to normal again 👀 .

[katie11]

Pick something special anniea and enjoy yourself. How you feeling today?

Good luck rosie65 xx

Trisha u will get use to it in some weird way. Im still looking at how white my bald patches are lol!

U feeling any better today treehouse! Maybe it's just having an effect on your hormones if you are emotional too? Although I am now craving marshmallows now you've mentioned them.

Good news bout tentacle free mai7!

Love the boy/girl comment MJK. Love how innocent 4 year olds are. My 4 year old turned around and said are you wearing your wig today mum. I actually have every day so dont know why it was any different yesterday!

Have good day ladies. I'm making a white chocolate and raspberry Cheesecake for hubbys birthday x

[MJK]

Good luck for today Rosie. Treehouse, my oncologist warned me that chemo would shut down periods and put me through the menopause (at least temporarily). She said that sweats are common especially at night. I expect being emotional marshmallow is partly due to this too, that and everything else going on... Trisha the grade 2 is a bit of a shock to the system. Let's face it, the cold weather doesn't help. I'm keeping my beanie on. 🤕

[treehouse]

Good luck Rosie. Thinking of you. 😊

[Rosie65]

Oh well  here we go again! Ding ding Round 3

[treehouse]

Hi Trisha my mum was ER pos and I am not so need genetic results to decide. Surgeon said I have as much chance of it not being related to mum as is!.
I have been waking up at 4am for the last few nights in a hot sweat. Could this be chemo induced menopause? My temp is normal and my period never quite made it.

[Trisha69]

I spoke to my Mum earlier (She lives in south of France)  she had HER2Positvie in 2000 but they say it isnt heridatary???  She said the same thing about the 'PILL' I am 48 and not taken the pill since I was 23. .

Feel very unsure about my grade 2 haircut, my ears and neck r blooming cold.  Am ok and ladies I coudnt cope without this site, big hugs xoxoxox

[treehouse]

Sorry your birthday was poop Annie. You really are so young to have this. Katie I just looked up Willow and started leaking again. That is so great. Go for it girls.
I am an emotional marshmallow today

[AnnieA]

katie I didn't know that but you've actually just made my day and I'll definitely look into it thank you x

[katie11]

Oh anniea . Probably not the birthday you thought. Hope you managed to celebrate in some way. As your under 40 there is a project called willow foundation where you can apply for a special day out. My chemo nurse recommended it for me . I've applied for weekend in centre parks with my boys so just waiting to see. Maybe you could do something nice for a belated celebration. Stay strong and enjoy the rest of your day xx

[AnnieA]

Well this will be a birthday I will never forgot, chemo this morning (I took cupcakes in for all the nurses) then the chemo Floored me and I spent the afternoon in bed. When I woke up and looked in the mirror I realised how much hair I actually lost and noticed a few bald patches so I braved the shave.
Phew that's enough for one day I think.
Thinking of Every single one of you brave ladies this evening xx

[Mai7]

Thanks Treehouse, feeling less like I have an alien waiting to burst out of my chest now! x

[MJK]

The verdict on my hair is in. 'Shinead O' Connor' from my husband, 'you look like a boy girl' from my 4 year old son. Alas, I think his is more accurate. 🤔 I'm keeping a headscarf on as more comfortable in my itchy scalp than Tribble. Trisha, well done for braving the salon and boss. X

[maggie aitken]

and talk to your sis. If she thinks you are kiding things from her, life will be much harder for her to deal with than facing difficult news together x (and that's enough grannying from me for one day)

[maggie aitken]

W : I hope you dont mind me shoving in here, I just so felt for you ... i think it is difficult moving from our comfort zones into this medical zone, which is so strange and alien and everyone chatters away as if you know what things mean.  It is difficult at this time, but if you have a question - ask them. You can look at Google all you like, but a straightforward chat is the most effective way and I hope they will be able to reassure you a bit -  clearly the lack of definitive information leaves too much room for doubt, and that for us in this situation is really deadly.

On the other hand, quite often we dont get information because either they cant be sure, as everyone is different, or possibly it is something - usually about side effects - that we dont want to know and, understandably enough, they do shrink from our reactions!  All this resolute cheeriness can be wearing. I think we ought all to be as straightforward as possible - in my first round I took an absolutely psychotic steroid reaction resulting in a change of chemo treatment, but much harder on me (though not merrily belting round aldi spending a fortune on rubbish).. but at least I know why.  You dont, and you ought to. And I feel sure, you are the kind of gal to go and find out - meanwhile all hugs and best wishes, I feel so much for you younger women (I am older and tougher, though fragile as hell of course): wish I could take on some of your worries.

[treehouse]

Mai congratulations on being tentacle free 🐙 😤 that is great news.

[Mai7]

Wow, I have some catching up to do on conversations!

treehouse, I think I'll avoid TV until the campaign is over, but of course heartstrings have to be twanged to get people to do fund raising - just not us right now!

WolfEE, try not to worry, if they were concerned they would have been honest and sent you for a scan. I just had my oncologist appointment today and my tumour is still 5cm (no change) but they're happy that the FEC is working as the breast has reduced to normal size, the orange peel effect has gone and one "tentacle" of tumour has gone.

AnnieA, happy Birthday to you...... 🎂🎉

Katie, yes, very windy today so I put my hood up walking across hospital carpark to keep wig in tact! 

MJK - Happy tribbling!

Trisha, well done on braving the shave and your boss simultaneously!

[WolfEE]

Thank you all for your hugs and support.

It's true I think it's what is not said that sends us in2 overdrive and panic. Because the doctor didn't really say anything at all good or bad I come away thinking well if she woukd have had something good or positive she woukd have just said it but because she never then it must be bad and becaue it's bad she avoid any answer because she can't say anything just yet!!!
That is all me and my brain and no reason that is the truth when the truth is probably she just doesn't know it's really to early!!
I wish I could fast forward two weeks have a peep and then rewind back and happily do the process even some dreaded sickness I'll do!!
I'm feeling better already it's just a let down when you think the day has come for some answers you've been waiting anxiously for a while and then the day comes and your no clearer. I've had my sulk and now I can just get on and take it as it is.

Thank you - I'd be lost without you all x

[Rosie65]

WolfEE -  big hug, please don' t worry too much. I hope my news the other day hasn't contributed to feelings of anxiety if lumps aren't noticeably shrinking immediately.  I think my experience was quite unusual and they seemed very surprised.

I was also told they would need to do a scan to see what exactly is going on in the breast/armpit and tweak the chemo if necessary and it sounds like they are going to do that for you which is really positive.

When they told me originally mine was fast growing I imagined it getting bigger by the hour and got quite upset. We all read too much into what's said (or not said) and our minds work overtime.

[treehouse]

Well done Trisha😁 Awesome!!
Glad Tribble has joined the party too.

[Trisha69]

Day13 and hair was falling out in clumps.. Queued for 2 hours at the local barbers, I am now a Grade 2 all  over and feel **bleep** 😞  On the plus side  I got a round of applause when I left the Barbers and then bumped ito my Boss,   Was wearing a turban, scarf and Super star sunglasses, and she still recognised me  and said WOW  u look amazing 🙂 xx

[MJK]

Big hugs WolfEE and treehouse. I think if we're honest we all worry about whether the treatment will work. It's good that they're checking it with a scan between 2 and 3 and can adjust if needed. My hair started falling out so I have taken your advice and am now grade 3 all over. I put the hair on the compost and Tribble is now in use. X

[treehouse]

Just seen the MacMillan advert and burst into tears. God that was too real for me right now. Was not expecting that emotional outbreak. 😢

[treehouse]

Wolfee. Sending you a big hug. I think that was my biggest fear of having treatment first so I completely understand your anxiety. Try to be positive for treatment 2 and wait for the scan. If they change your treatment that can only be a good thing . I have an undiagnosed lymph node that they can't biopsy near my neck and I have some how managed to not think about it. I think my tiny chemo brain can only focus on one thing at a time.

[katie11]

On a lighter note ladies what your weather like today? It's very windy here in Manchester. So much so I thought I was going to lose my wig this morning in the playground taking my boys to school! Lol! Think I need to invest in some wig tape unless you ladies have any other tips xx

[katie11]

Bless you wolfEE. Its completely normal to worry during this journey. We are all here to support you. I'm sure it's doing its job it's just early days.

[WolfEE]

1st check up today with oncologist and she looked at the 'new' lump she didn't really comment good or bad she wasn't giving anything away. She said it's to early after just one treatment to know if it is working. I'm to have my second chemo Monday as planned then a week later I will have a scan and if it appears that it isn't working then they will change the drugs for round 3. I'm so worried it's not working If it isn't controlling the breast lumps then perhaps it's not slowing the lymph nodes down either my CT scan was clear on all organs I'm petrified of it moving out of the lymph nodes because the chemo isn't working.
Does anyone know how often the chemo drug combo isn't correct or how often this happens? I'm sure it's because it's such early days??
I actually feel bad discussing this with you girls incase I make any of you start worrying or questioning out treatment so I apologise and don't want to make anyone feel more stressed but I don't want to voice my concerns with my sister because she is worried enough and I don't want her having this added concern.
Sorry girls but i needed to tell someone. Xxx

[misyangel]

Happy birthday Anniea have a best a day as you can xxx

Heather completly understand you take care xx

[MJK]

Happy birthday AnnieA. 🎂 I hope today goes well. Thinking of you Trisha, we know it's coming but it's still a bit of a shock. I'm on day 14 and am starting to shed a few hairs. My hair is already in a pixie crop. X

[Rosie65]

Happy Birthday Annie A all the best for today.

Totally understand Heather, it's difficult to retain a sense of perspective of times. It's such a surreal bubble we inhabit these days.

I didn't actually shave my hair but had it cut into very short bob. I still some have the hair at the roots perhaps because of the cold cap. However, although it's ok indoors I don't have the confidence to go out like that as it's very thin so I wear the wig outside.  It's such a personal thing and I think only you'll know when it's time to brave the shave.

[treehouse]

Happy birthday Annie A. Wow big day for you. Wear a badge or tell the nurses, mine are great and I am sure they would make a fuss for YOUR day. 🎂 😊
Hang in there Trish. I just kept saying that hair loss WAS going to happen. Now it is, my treatment must be really working. And it is only temporary. We are all with you. X

[katie11]

Happy Birthday Anniea xxx

[WolfEE]

AnnieA, happy birthday!!! What a way 2 celebrate I'm keeping everything crossed it goes smoothly for you and you can keep that sickness at bay and enjoy some birthday cake tonight when it's all over.
I'll be thinking of you today xx

[AnnieA]

I could think of better ways of turning 32, but I'm up and getting ready for EC round 2.
Trisha, we can be scared together, I cold capped and yesterday I lost a huge clump of hair. I'm nowhere near ready to brave the shave. Hugs to you x

[katie11]

Trisha don't be scared. It is a nervous time but you will surprise yourself at how quickly you change your mind and just want your hair gone and feel positive about it. Again it's the fear of the unknown but you will conquer it just like every other step x

[katie11]

Good luck Heather xx

[Trisha69]

Day (silly o clock) 13 hairs falling out . Feel scared xx

[treehouse]

No problem Heather. That is the whole point. It is here when we need it. Talking to my husband about 101 non cancer things tonight when he suddenly asked how i was. We are in a strange bubble and I don't quite feel like I am fully participating in life. I am on pause. But as we go further into treatment we become professionals.
Best of luck x x

[WolfEE]

Love and hugs for Heather xx

[Mai7]

I understand Raitchr, of course we're here if you need to come back at any point. This is the only forum I'm on. I keep it all contained in here! Best wishes.

[Raitchr]

Hi ladies. I think I am going to have a break from cancer forums and facebook groups for a time. I love the support and encouragement that we all give each other but at the moment I feel like cancer and chemo consumes my life from waking to sleeping. It isn't anything anyone has said or done but just want a little bit of the old me back for awhile. I hope you understand.

I will check back in from time to time and didn't want to leave and not say anything and you wonder where I was.

Best wishes everyone, see you soon.

Heather

[Mai7]

WolfEE, Treehouse,  I had difficulty at first wearing reading or sunglasses with the wig. I worked out that you have to sort of thread them through the layers but not under or it lifts the wig out too much. For the first few days of wearing the wig I had it pulled down over my ears and it starting hurting them so I now pull my ears out! Works well now. One of those questions I never thought to ask in the salon! 😀

[busybeeS]

Treehouse. I had mine shaved to 9mm before chemo. Now I only have stubble I have shaved it to 1.5mm, don't know the grade but I guess it's a grade 1 so practically skin head. I don't wear a wig so not sure how it would feel under wig. I don't really want to shave it any closer to the scalp as I want something to rub at when the rest starts to falls out - to help it along!
It's all a matter of perspective and staying positive. It's only temporary, as I'm having 6 FEC I don't expect mine to grow back before Oct, so I'll be getting the winter bobble hats out!

[Mai7]

Treehouse, good. Glad you're ok. X

[treehouse]

Thanks Wolfee. I also wear specs and I put them over the wig base but under some hair so it doesn't push. Mum met Ashley (wig) and watched me put it on. that put a big smile on her face. I find if I am ok, everyone else is too. 😊