February 2017 Starters

[zena75]

Hi Ann so glad you ok . Hope chemo ok as it can be xx
Moijan .. I feel it's not working as still got lymph node pain .. also my boobs hurt so much before my period it's not right ! Did yours still hurt during your chemo ? And did you suffer bad side effects from chemo?
I have called and asked for onc meeting but want ovaries out really .., and the op now .. I'm so unsure what to do but I don't feel chemo is doing any good. It actually feels like it's killing me.

[Moijan]

Hi Anncan
Just going to sleep, but wanted to wish you luck for your chemo. Anxiety feels dreadful doesn't it? However, it's quite normal and your session will likely go really wellxx

Really spoil yourself and give yourself lots of hugs xx you are doing well

moijanxx

[AnnCann]

Dear Ladies, you all rock...I have been following you all but fInding it difficult to reply.  I have been such a wimp the last few weeks and I apologise for not being in touch.  I suffered a few SE after chemo No 1 on 2nd February but not too bad and I have been feeling my old self this last week, apart from the fatigue.... on the other hand I have been suffering from anxiety. I am still finding it difficult accepting what is happening to me and I have almost lost all of my hair..... My scalp is sore and itchy.... thank you all for being there it has been a great help and comfort to me... I see we have been joined by several ladies in my absence. 'Welcome' to you all and sorry that you find yourselves  here but we have a very supportive and special group of ladies...  I am ready for round 2 tomorrow. Hey max, my chemo buddy, how are you doing?  Hope your side effects were few...  will drop a line on our Fab February FB page too.... love to all xxxx

[Moijan]

Jac, how did chemo go? Was wondering if you found it easier than you had feared? Anyway, hope all went well.

Zena, just realised we have the same bc, Im sure I said( far too often) that they trIed to shrink my tumour before the op, but in my case it didnt work...tho my tumour was pretty large!

at any rate, all that took place in 2001! Such yonks ago now...cant believe it!

anyway love to all of you ladies,  hang in therexx

Moijan😎

[Angie pink65]

Hi jo I've sent I Facebook request hope I've sent to the correct person lol xx 😆 I've not got anything on my Facebook that I've got breast cancer as not everyone know just try to deal with it myself first.. love angie x

[Angie pink65]

Hi jo jo Hope ypu are ok and thank you for inviting me to join the Feb 17 ... AS far as I know the chemo is 3 Fec and than 3 T something 1 chemo every 3 weeks .. then same as you tamoxifen for 10 years.. The consultant said that because it's hormonal that they might have to operate to remove my ovaries at a later date after chemo .. not sure if any one else as been told the same . How to I find you on face book sending hugs xxx

[Angie pink65]

Hi zena The operation lumpectomy removal of the lymph nodes and reconstruction was much better than I thought obviously iam still in some discomfort .. but I was absolutely dreading it as you can well imagine .. it's just 6 weeks ago now but my breast surgeon has done amazing job even the district nurses said .. what a good job he's done .. . The most painful thing I would say is under my arm where the lymph nodes have been removed but other than that ok ... iam sure you will be fine x just make sure you do the physio they give you to do has that as really helped also iam doing extra physio on a trial which is called the Prosper trial. Which is hard at first but really good ... .. sending hugs xx love Angie xx

[atomicjojo]

Welcome Angie!
I'm exactly the same as you except I'm grade 3. I've had 4x TC (docetaxel & cyclophosphamide) and surgery lumpectomy plus node clearance now on 2nd phase of chemo 4X FEC. 1 FEC down 3 to go! Then 4 weeks of rads & tamoxifen. Oh joy!
Everyone is nervous about chemo. Once your first one is out of the way you'll feel a bit better in as much as you will know what to expect. Keep a diary of your side effects & how you feel & you can plan for the next cycle ie what days you will feel human for days out or work etc.
Feel free to join us in the Facebook group if you like! Or you could start a March starters board. I'm sure there's lots of ladies out there who read posts but aren't confident enough to speak!
Anyhoo it's good to speak to you xx

[zena75]

Hi Angie .. welcome but sorry you are here ..
I have grade 2 lob dc and lymph nodes. Not had the op as my tumour big so wanted to shrink it .how are you feeling after the op , and is the recon good ? Also how are your lymph nodes now .. sorry for questioning I just so keen to get chemo done and have this stuff out of me xx

[Angie pink65]

Sorry iam new to this forum ..x

[Angie pink65]

Hi jo jo Thanks for inviting me to the Feb 2017 . I am having my chemp pre assessment on the 6.3.2017 I've already had lumpectomy with lymp nodes removes and reconstruction. I have er and pr postive her2 negative grade 2 cancer .. not sure if that's really bad ... but feeling very anxious about starting chemo .. still can't belive this is happening. . I'll ending hugs to e eyone one here xx love Angie

[Mama T]

I'm with you Jo on using walking to relax. Pre all this stuff I used to do lots of walking - nothing special, just in the local area, but I'm finding with chemo I just don't have the energy most of the time, until maybe week 3. I couldn't even manage to the local shops yesterday (15 mins away) without wanting to sit down but then I suppose it was day 5. So I've found some of the meditation music quite useful to relax me, esp during the chemo itself. I've heard that yoga can be very good for increasing oxygen levels and improving feeling of wellness, and depending on the type, is probably less strenuous than walking for miles.

Tessa

[atomicjojo]

Jac I've now added (& welcomed!) you to the group. You should be able to access it now.
As for meditation - HELL YES!!! I don't do the sitting still type, find it virtually impossible actually, but most people don't realise you don't have to do it this way! I lie to walk & meditate. With lungs full of oxygen (O2 really helps our cells to repair). I'm lucky to live near the beach & can really forget about **bleep**e & hunt for treasure. I love collecting shells & belong to the #2minutebeachclean community. We clear beaches around the country of plastic & other rubbish (always find shoes!) That's my way of relaxing. Yes I am a bit of a navel gaze (sorry not sorry)
Looking forward to hearing your story Jac!

Jojo xx

[Maria12]

Not ever tried it jac , but then again im hopeless at keeping still 😀 x

[Jac_R]

Do you ever try meditation or deep breathing Maria? I've tried to lie still and take deep belly breaths and imagine myself covered in glowing energy lol - I feel silly saying it out loud here but it actually does help me feel a bit better and calmer! I read somewhere that meditation can be a powerful ally in beating cancer.

[Jac_R]

Found you on Facebook Jo and I've done a friend request. I'm not great with technology so does that then give me access to your group?! Or do you add me to something once you've accepted my request? Doh I'm really not the best at fb etc!!

[Maria12]

Same here jac , lump was very big so aim is too shrink and avoid full on masectomy plus i have to have lymphs underarm removed.If im honest despite how much the thought of surgery scares me , if i had to have a full mastectomy to keep me here then i would..as for chemo once you have your first one your get gist of what will happen and if meds they give you dont work , they will try you on new ones next time .my biggest fear is the infection side of things not knowing if id know if it was serious and get it sorted in time xx

[zena75]

Hi Jac
I like your style.. it's that friend like a stalker tho that you'd rather feel down a pit..
But yes Like you I'm trying to be brave and positive , it's gonna shrink this massive tumour and leave enough skin for some small bump like boob that won't scare my Hub , the kids ... or me 😜
I'm not clued up on tn as I'm lob duct thingy er her positive.. so it's 3 Fec -3 d or t .. with herceptin too ..
I'm a the sick one so come to me If you feel nauseous as I'm now the expert with my Nissan Micra sized syringe driver hanging round my neck 24 /7 .. but it's stopped the nausea so not complaining ( much 😖😖😖😖😖😖)
I still feel rubbish day eerrrrmmmm 5 after my second chemo . They are 21 days apart .. but I know it does get easier.. i have 3 kids 4-9-10 and luckily as I'm unfit for anything my parents and Hubby are doing it all ..
join the fb gang Hun if you can then you can see all our little faces xxxx

[Jac_R]

Oh my goodness you're sure in the thick of it. I'm sure they wouldn't give you another round if they thought it would make things worse.

I've to get 6 rounds then get my surgery. The breast surgeon told me if he operated now he'd 'make a mess' of my breast cos the lump is pretty big. I think he hopes still to do a lumpectomy if the f*cker responds to chemo enough to shrink it down.

I hope by the time you read this your temperature is under control again. Hope the next round goes ok. I'm trying to steel myself with the mantra 'chemo is my friend' !!!

[Maria12]

Currently have it , was at hospital today as i have chemo wednesday .They done extra bloods and urine test ,plus my temp was 38.1 when i turned up at hospital , they sent me home with antibiotics plus my wbc was down .Temp is still up , i dont feel ill as such more hot and run down .hoping antibiotics kick in soon , despite infection they are still going ahead with chemo which is worrying the hell out of me .Im having 4 ec then 4 pacitaxol then surgery depending on the effect the chemo has had and my brca results xx are you having yours first x

[Jac_R]

EEek an infection?! - that's one of my biggest fears...did you get over it ok?  That must've been scary for you.  Are you getting surgery after your rounds of chemo or did you have it first?

[Maria12]

Hi jac , im also tnbc but on 2 weekly ec .seems its very much down to your body tolorence .i had my first ec 2 weeks ago and been hit with alsorts even a infection .others on same chemo have had minimal side effects .Other than the great fb page jojo mentioned , there is triple negative warriors uk they are a lovely bunch who obviously all have tnbc and they are full of advice and how they handling all the treatment x

[atomicjojo]

Jac my name has Royal Bournemouth Hospital after it!!

[atomicjojo]

Jac sounds like you've got a lovely family! You couldn't be any further away from me...I'm on the south coast!

If you search for Julie Owen via Totally Local Broseley (think that's right) or search for me Jo Sheppard (I think mine will say Registered Pharmacy Technician after my name) & will get you added xx

[Jac_R]

Thanks Jojo.  Yes, I've got my sister who's an absolute rock!  I've also got my kids (11, 10 and 4) who I've told and the older two I think will be up for helping me!  My parents stay in Edinburgh which isn't handy (I'm in West Lothian) but I'm sure they'll bus it out on days if I'm struggling.

I'll have a wee look on Facebook, what name/group should I be looking for?

[atomicjojo]

Hi Jac & welcome to the Feb forum!

Sorry you've had to join us but you've done the right thing by sharing your worries with us.

We seem to be on lots of different types of chemo. When you say FECD, do you mean FEC -T? Alot of us are on the fec at the moment plus I've already had 4x T (docetaxel ) last year.
Some of us are cold capping & some just going for the Mrs Potato Head look! I shaved mine off as I couldn't deal with how sore it was!

There are lots of side effects that seem to hit us all differently so try not to worry too much. Fatigue is always going to be an issue with any chemo though. As far as mouth ulcers go, I haven't had a problem with either regimen although with fec I've had sores in the corners of my mouth, just used Blistex really. Your team should be giving you mouthwash. Make sure you ask for it. My hospital gives Difflam which is great. I've also had rough gums but not really affected my life to be honest.

Do you have family to help you Jac? Having support is very important but if you don't, then we're all here for you! We have our own fb group where we can share pics etc. Feel free to come on over.

Take care

Jojo xx

[Jac_R]

I'm Jac and I'm due to start chemo on Weds 22nd Feb.  Feeling a bit scared!  I've read through the literature and am 'just' scared of the effect it'll have on me.  Seem to hear varying accounts of people sailing through and people suffering with exhaustion and nausea.  I've got TNBC and I think I'm getting FECD...anybody out there due to start that as well or something similar?

I went for a wig fitting today and have chosen one.  I was going to try to save my hair but the wigs look so good I figured I'd just let my hair go...it's one thing less to worry about eh! - plus I colour my hair and need my roots done LOL so I'd look a sight by the time 4.5 months has elapsed!

Can anybody recommend anything to avoided mouth ulcers?  I saw my dentist for a checkup and he wasn't particularly helpful!! 

[atomicjojo]

Any ladies out there starting chemo in march?

It's really easy to start your own March board. I the meantime feel free to share any worries you may have. We're a friendly bunch & have all had different experiences of chemotherapy so I'm sure someone could help.

Jojo xx

[zena75]

Hi
Ann can are you ok lovely lady? Just pop a quick post in if you can xxxxxxx

[Pinkloz83]

Hi Lisea

Just wanted to say hi as I'm in Leeds too. Had my first chemo on 15th Feb. Come over and join us on the Facebook group x

[Jules1]

Hi everyone

Hope you are all okay.

Had my 2nd chemo yesterday and was told that my bloods are Gold Star. Also given pre-emtive anti indigestion tabs to take every day as I bad indigestion so no rennies taken today. Nurse said that acid in the stomach is not good for us. So ask your nurse if you are having acid reflux.

Been putting off shaving off the hair as I'm wearing a nice turban all the time. When I do take it off I look a bit mad and the hair is all over the turban. So before I go to bed tonight it is coming off. Might put it out for the birds to make nests!!!

Any newbies we have a facebook page which you can find by looking for Julie Owen on the Broseley totally Locally facebook page. Send me a friends request and I will add you to the group. We are calledthe Fab February Girls but it is a closed group so you have to find it via me.

Lots of Love

Jules 1

[atomicjojo]

That's great info Tessa, especially getting full pay even if hours reduced.
I'd have to have a phased return anyway and it literally would be for one week out of 3. I'll get in touch with my boss to discuss.
Thanks! Xx

[Mama T]

Forgot to add that even on the days you do plan to work, you should be able to agree reduced hours or duties as part of a temp adjustments plan due to your disability ( bc counts as one under equality/ disability legislation). My normal hours are 36 per week, but I have a local agreement to work 5 hours a day on discrete tasks, rather than long term projects which is my normal job. I still get paid in full, and not part time wages, as this is a temp adjustment while I go through treatment. Macmillan website has loads of info about how to manage work etc, for employers and employees. 

Hth 

tessa

[Mama T]

Hi jojo

i have been working. I rang in sick today though as I wasn't feeling great this morning after chemo yesterday. I am waiting for my employer to let me know if they are happy with a blanket fit note for 3-6 months that says I may be fit to work on reduced hours for 1-2 weeks each cycle. The fit note would then cover any absences I took during the period and my boss would just register me sick accordingly. Otherwise if I am only off a week each time I can self cert. Getting notes every time from the GP is a bit of a pain so I am hoping they will accept the 3 month one with notes. Will let you know when I find out.

tessa

[Maria12]

Ive had to give up work which i hate its a long time for me to not work , though seems quite a few manage to work straight through xx

[atomicjojo]

Work related question.
Is anyone working at the moment? I'm thinking of going back to work on my good week ie after day 12.
How does it work with sicknotes? I'll need a sicknote for like 2 weeks then work a week, then repeat the next month. Has anyone else done this? My ssp runs out mid March so need to get a plan together!

Jojo xx

[atomicjojo]

Zena you absolute star!
I really do hope your driver works well for you & you can get some respite from the hideous nausea. Take my hat off to you lady!
Keep on keeping on xxx

[Mama T]

Ah Zena,

Glad to hear you are home OK now, and dripped up. Hope the nausea isn't as bad this time round. We were all wondering how you'd got on yesterday so pleased that you've checked in. Yes, I had a rubbish sleep last night too (Steroids!!) and am cutting right back this time instead of popping them like smarties (on advice of ONC and nurse).

Just think, 2 down, one to go (on FEC anyway).

Tessa

[zena75]

Yes I had that yesterday.. first line in hand stung for ages so I said as 2 hours with that in would have been agony .. second not as bad so that was ok ..
It's def experience ( no offence to my lovey nurse) but a man put one in when I was in AE last week .. it was rubbish and stung for ages . I told him and he said probably from the alcohol wipe !!! I ask you like I'd moan about a tiny bit of sting from alcohol.. I lay there in agony at both ends ( 😞Lol🍇) and when he took it out massive bruise ..
I asked the nurse who took my blood for chemo and she said she is trained and trained as she is a blood specialist nurse but others can get very little practice e.g. Doctors so never let them do it ..
Potluck really but I do get nervous when it's a young nurse as par for the course they haven't got as much experience..
I've got my driver in ... it's massive ( Google them ). I slept quite badly .. feel very tired 😴
It's got nozinan in the driver the kardashian dream drug so dreadful big seeing them again ..
it's a low dose so just a steady stream of zapped ness
But if it stops the nausea half as much Il be happy ..
I'm shattered to will update when I can
We fight on !!! Xxx

[Moijan]

Aaah, thank you Jojoxx

I think experience and technique are two good words to sum up how things go.....I did think that if we all went on ports then the lovely nurses( and they are all lovely where I go) would become de skilled, so that would never do!

any task takes practice and practice and prac........so I have every sympathy for them when it doesnt work...but of course its such a joy when the cannula goes in first time xxx

Moijanxx 💖

[atomicjojo]

I know! Sharp scratch? Really? Try drilling for oil..
Sometimes I feel it more than others. My first FEC I hardly felt it go in & no bruise. On the Tax I bruised badly so not sure if it's technique or the drugs!
Either way it's got to be done & no one has ever mentioned ports or lines to me where other ladies they seem to be standard procedure. Odd how different the procedures are all over the country.

Rest up now Moijan. Keep us updated on how you're doing xx

[Moijan]

Jojo....thank you....yes it did go well.

i have terrible veins, but my lovely nurse managed to get one 1st go and I didnt feel a thing...tho must admit, I dont worry too much now usually about a bit of a 'sharp scratch'  as everyone likes to call it

( have you ever heard the like? Well, I ask you!)

. I just pray for success xxx   i have always hated needles, which was why I went into a job where I was at the other end of one!...... Am the worlds worst..,but getting a bit used to it now.

Today, Jojo.I i actually felt nothing at all tho...isnt it strange how some times it hurts and others not!

Mx

[atomicjojo]

Yes Moijan!
I'll do whatever it takes to stay alive!
Hope it went well for you today

Jojo xx

[Moijan]

Zena...thank you. I do try,a bit, as thats how this forum works....but actually I learn a lot from you ladies too. Obviously ive been through the primary diagnosis and op, treatment rads, etc, before .....but you ladies are so very vibrant and supportive to each other....I pick up tips for myself as well as for other newbies.xxc

i will just share tho, that when the dratted bc did return.....I was feeling similar stuff to that which you all describe.......I really didnt want chemo again.......but like you I adapted and life went on.

now im going to say something radical and most unlike me....but when those of you who go on maybe hormonal stuff, or even chemo, hang in there.......,just go with the flow ( get your doses adjusted if need be and get help with any side effects)  what you really want to do....is...., knock the bggr on the head, so it never, ever, comes back!

Thats the main thing. Xx

Moijanxx💖

[Sparkydee]

We are allowed to b space cadets!!! 😂😘 xxx

[zena75]

Ha I just read the bottom Sarah - see how dumb I am .. meant the sb on face book - god I'm such a thicko .. I thought it was odd ., xxxx

[zena75]

Oh sorry I'm so dumb .. are you Sarah ? I'm forgetful as hell and can't use chemo as an excuse really xx

[Sparkydee]

Had my first one yesterday Zena, so 7 March for me...

Sarah xx

[Maria12]

😂😂 zena love your posts they do make me giggle ..x

[zena75]

Arw moijan your such a support Hun I almost forget you are going through this too .. bless you darl .. we are lucky to have you with us ..
Dreading more poison but I guess it's got to be done xxxxxxxx