December Angels 2013

[SJB]

Thanks. I'm not bothering with the cold cap but I have to have a PICC fitted first, which takes about an hour, then they can start with the chemo drugs.

I'm sure I'll be calmer after the first one, but yes, I'm a wreck right now, heart pounding, stomach churning!

I've drunk about 4 pints of water since they called me to get me in tomorrow. I am focussing on hydration, as I understand it will help a lot.

Fingers crossed. If you lot can do it, so can I.

[Sarahmummy]

Hi sub, good luck tomorrow. I had my first chemo last Thursday. Not as bad as I thought and to be honest I was a brimming nervous wreck beforehand! I did the cold cap too so took longer. I felt drained afterwards but more emotionally drained than anything else. I then had a pounding headache (cold cap) and slept a bit. Friday Saturday and Sunday I took things easy and stuck to the guidance of the anti sickness tablets and didn't get sick. It was like a bad hangover for a couple of days xx

[SJB]

Anyone who wants to join the FB page, just send me a private message here with a link to your Facebook page, or if you don't know how to do that, your full name as you are listed there and a description of your profile picture so I can find you.

I have to add you as a friend first, then I can add you to the group.

[Sarahmummy]

Hiya I,m sarah Facebook page sounds great xxx

[Kander]

Good luck for tomorrow SLB. I'm not so much nervous about the chemo, although I do wonder what it will all be like. My biggest worr is hairloss. I am coming to terms with it but I'm worried about how my kids will feel. My eldest is 6 and understand, the youngest is 7 months so won't care but my middle child is 2 and at the age where things are questioned and I'm concerend about how she will react. I'm hoping head scarves will hide the fact that my hair has gone but at the same time I'll have to figure out how to explain it so she will understand me.

[SJB]

Just had a call from the cancer nurses. My first chemo session is tomorrow and I have to change the bone scan appointment that I had booked for tomorrow morning. Can't get through to the Nucleasr Medicine department at the moment.

So frustrated. Why do they have to turn everything on its head?

[Tracy1967]

Oh Ro21 I'm so sorry for you and your families loss. The poems are beautifully, i can see you were truly loved by your sister. Take care

Tracy XXX

[SJB]

I've set the group up, and marion3 is already there with me. Jonamo and Ro21 - I've sent you both friend requests as we need to be friends first, then I can invite you to the group.

It's a secret group that cannot be found by others or seen at all except when I invite people to join it, so you can upload photos and say whatever you want without any fear of others seeing it.

Those of you not on Facebook - it's very easy to join, but you need a certain level of understand of how Facebook works. I'm happy to guide you through that if you would like to give it a go. At the end of the day, if you try it and don't like it, you can always deactivate you account and go away again.

It will not mean we don't post here. We will need this forum too. That's just a more relaxed social place where we aren't moderated and can chat about anything we like. I hope that all makes sense.

[Jo_BCC]

Hi Petal88

There is always someone on these forums to help you along.  The moderation team always read the posts and will come on and point you in the direction of extra support if we feel that's what you're looking for.  I am sure your fellow forum users won't abandon you and will continue to post on here as well as their Facebook groups.  The support people have gained over the years from using these forums has been wonderful and will, I am sure, continue.

To help you along you might like to join in our General Live Chat sessions which run every Thursday evening between 8.30pm and 9.30pm, there you can chat in real time to other users of this website plus the session is hosted by a nurse and facilitated by a moderator so there's always someone to chat to.  I've put you the link below, do give it a try, it will be good to see you there.

http://www.breastcancercare.org.uk/community/chat

Take care,

Jo, Moderator

[Butterfly318]

Morning Petal88

I see you are up early and as you say scared.  Just want you to know whichever way you go forum / facebook or both you will get lots of support from people who are at various stages of treatment and will always understand how this whole diagnosis and treatment is for you.  Although you are having CT on Tuesday it sounds like you already have a plan in place for Chemo on Wednesday and hopefully you will feel better when you talk to the Chemo Nurses on the ward today.

I won't tell you not worry but remember you have a whole team of professionals with your best interest at heart so please ask them anything you need to know about when you will get results from CT etc and just take one day at a time with the treatment. Lots of girls currently having Chemo / planned Chemo will be posting on this thread so you'll go through it together.  Everybody will be at different stages of treatment, some will have had surgery,  some having Chemo first.

I didn't discover this forum until i went to a Moving Forward course run by Breast Cancer Care..  I was diagnosed in October 2012 and have had Chemo, Surgery and rads,  just waiting reconstruction next year.

I used to write everything down when i went to scans / ward visits etc so i could refer back to it and because i was so anxious i was practically manic and giddy at appointments.....

Hope that ward visit goes OK today and your Chemo gets under on Wednesday.

Take Care   Gilly x   

[Petal88]

I have only just joined this forum and feel lost as I don't use Facebook. Won't it take the support away from here or will you still post on this forum? In am so scared at the moment as my whole chest hurts and I don't know how long it will take to get results once I've had my CT scan tomorrow. Going to see the ward today ready for chemo on Wednesday.

[Ro21]

Evening girls. Thank you Jac and Jonamo for your kind comments.

Welcome Kander, be brave so often your fears are far worse than the reality but I know it's really difficult not to worry. That's why these forums are so good, someone's always been there before u. I agree with Jonamo, I firmly believe drinking so much water has helped to lessen my side effects and pineapple definitely helps the crappy taste in my mouth.

Good luck for tomorrow SJB hope you get a date soon- didn't know how to message my Facebook link so sent you Facebook details instead hope this is ok.

Caught my sisters cold so nose streaming today- hope it won't delay 2nd chemo on 23rd, spent most of the day in bed watching law n order- can't remember the last time I've spent most of the day in bed but figured my body needed a bit of a rest.

Missed my exercises/massage on Thursday n Friday coz of all the stuff that was going on & my Seroma feels worse, definitely need to make sure I get back into it don't want that puffy little bugger coming back!!!

[Jonamo]

Thanks SJB. Have sent my details.
Good luck tomorrow.
A x

[Bellablue1]

Hi SJB

I would luv to join but do not have a Facebook page. Will it be easy to join ?

I am starting to feel anxious as I start on the 18th December @ 9.30. Jacx

[SJB]

If you are on Facebook, send me a private message here with a link to your Facebook Page. I can set it up tomorrow and send you an invitation to join.

It'll be a closed group so only we can see our posts and photos.

I've been very anxious this evening about that phone call tomorrow to get my start date for chemo. I need something like this to cheer me up.

[marion3]

That sounds like a really good idea, though clueless as to how you do it!!

[SJB]

I have set up facebook pages, so could do it if you like. I think it would be nice, if there's enough if us on there.

[Jonamo]

Hi, what are everyone's thoughts on starting a private Facebook page? I see some other monthly threads have done this, and share pics and other things...don't know how to set up a private page but can give it a go, unless someone else has experience of this and wants to do it. Just let me know.
A xx

[June_BCC]

Hello SJB

I have attached a link to an article on our website, part way down the page it mentions 'cording'.

http://www.breastcancercare.org.uk/news/vita-magazine/coping-chronic-pain-after-treatment

Our helpliners are also on hand weekdays 9-5 and Sat 10-2 to answer you questions, the freephone number is 0808 800 6000.

Best wishes

June, moderator

[SJB]

My husband and I hit the shops today. Boots the Chemist and Holland and Barrett! lol Got loads of stuff that has been recommended to ease the chemo symptoms and nausea. Hopefully some of it will help.

I don't have any pyjamas. Should I maybe buy some to have packed in a hospital bag?

Also, although I hesitate to ask, I'd rather know than not...a couple of you have mentioned having problems with "cording"...what is that?

I think whether or not I need Herceptin depends on the final result they were waiting for from my biopsies.

Very nervous about finding out when my chemo starts now. *gulp* So glad you lot are here to talk to.

Sue x

[Petal88]

Hi Kander. This forum is such a good idea, to be in touch with others in the same situation at the same time even if treatments vary. I found it helpful to print off the list about what to have in before chemo and all sorts of stuff to help you be prepared. It's a bit further down the page.Thanks to those who compiled it.

[Petal88]

Hi SJB. I'm having chemo first plus Herceptin and I'm nervous about starting on Wednesday. Let us know which day you get. I have pre chemo bloods etc tomorrow.

[Jonamo]

Hi Kander, welcome to December Angels, think our paths have crossed on another thread. Sorry that you are still having trouble with cording, my ANC was 6 weeks ago, I also have cording, but I have continued to do all my exercises every day, at least twice a day. My arm always feels better afterwards and I am now able to stretch my arm vertically up in front and to the sides. I feel the cords stretch but I can do it, I would say that it just gets better and better every day, so keep persevering, as it's only been in the last 2 weeks that I have been able to do this.
I have already had my first chemo and although very sick for the first few days, I feel fine now. Some have not experienced the sickness so I hope you are one of the lucky ones and are fine for Xmas day. Take all your anti sickness regardless of feeling ok and drinks loads and loads of water the day before, during and after.
A x

[SJB]

Hi Kander. You've come to the right place! We're all going through similar experiences at the moment, although not necessarily in the same order.

No doubt others will be along shortly to say hello. There's loads of information on this forum if you look around, plus real people who can give you tips on how to ease various symptoms of the chemo. 

I'm having chemo before surgery and think my first session will be this week. I find out on Monday. Tinsy bit nervous about that, but keen to get on with it really.

My tumour is 5cm and lymph node positive, so they want to shrink it with the chemo before deciding whether I need a mastectomy or lumpectomy.

My name is Sue, by the way, and I'm 47. It's all been quite a shock but I'm just focussing on getting it all sorted out.

[Kander]

Hi all,

Can I join your group. I start FEC on the 23rd.

Was diagnosed on the 22nd of oct witha 4.5cm IDC grade 3. It was triple pos, Highly her2 so I'll be having my 6 doses of chemo with herceptin, followd by rads and tamoxifen to boot. Has my mx 5 weeks ago with full lymph node clearance and now suffering with cording which is a real pain the the behind.

I'm nervous for obvious reasons and worried/scared about hair loss but what will be will be.... 

K xxx

[Jonamo]

Ro, I am deeply sorry for your loss. Stay strong. I especially love the second poem, it is beautiful and you will have these to cherish in your sister's memory.
A x

[Bellablue1]

Hi Ro21

My prayers and thoughts are with you and your family at this difficult time.

Her poems are so inspirational. Want a wonderful lady and you are too Ro21.
Luv jac x

[Ro21]

Evening Angels, sorry I have not been on the forum to support u all in the last few days but sadly my sister passed away and I haven't felt able to even look at the computer.

Since 2006 she had battled & controlled her mental illness successfully but was unable to conquer her compulsive eating disorder. Although we are waiting for the post mortem result I am sure her death at 46 was directly/indirectly caused by this.

Looking through her stuff I've come across some poems she wrote about cancer and me & I'd like to share them with you.

A Threat to Cancer

Cancer we know where you live
There is no hiding place
We're coming to get you cancer
We will annihilate you off the face of the earth
Cancer you will not win
Cancer be afraid, be very afraid
Cancer, we're coming for you cancer............

To my beautiful Sister

Today as always you are my beautiful sister-both beautiful on the inside and out
Brave in the face of adversity with your hair all falling out

Today as always you are my beautiful sister-both beautiful on the inside and out
Stoical in meeting cancer and determined to beat it out

Today as always you are my beautiful sister-both beautiful on the inside and out
You are a brave survivor, keep fighting to kick cancer out

I wish she'd understood how much she was loved & respected by everyone who met her but I don't think she ever did.

Love and best wishes to all of you December Angels.......Ro x

[Jonamo]

Sorry you've been so sick Marion. Hope you feel better soon.
A x

[mazbee]

Hi Marion, sorry to hear you've had a rough time, hope you are soon home and feeling better. I have not been unlucky as up to now I am fine after my 1 st chemo yest. I did drink a lot which I think helped, Before, during and after and am still doing so now and even during the night as I often wake. Ok so I do need the loo a lot but if it helps.. I am concerned I may feel rough when my medication finishes in a couple of days but trying not to think about that.
I'm interested to hear a lot of you have the injections for white cell count, I haven't been given anything for that. The only injection med I was given is for sickness and that just for emergency if tablets not enough and then I need to ring the district nurse to come and do it. Don't think I'll need it now but fingers still crossed. I kind of wish I had something tho as the risk of infection does worry me.
Love to all of you
Maz

[Jo_BCC]

Oh dear Marion,

Sorry to hear you've ended up in hospital, and that you're soon feeling better.  Keep posting here there's always someone to chat to.

Take care,

Jo, Moderator

[marion3]

Shouldn't have spoken too soon felt fine after 1st chemo then in the evening the sickness was awful had to go to hospital been here for a few nights. Feel whole lot better now will have stronger drugs for the sickness next time. Gosh it's such a roller coaster ride.

[Joanne1973]

Thanks maz, petal and everyone else for their good wishes. Chemo went absolutely fine, the cold cap is tolerable worse for the first half hour then you get used to it....be prepared for your hair being frozen solid when you take it off!!  I didn't drink nearly enough, hardly anything, as was conscious about going to loo with the cap, think I'll be better next time. Was really nice that I used to work with the nurse giving me the chemo,he was very good wit h me and I felt at ease. Was in a bay of four, just polite hellos, but had my friend with me and was able to talk and half a laugh, mainly at my fat cheeks looking like a hamster with the cap!!

Felt really quite sick overnight but it did ease with drinking sips and better today after taking meds. I just feel quite tired with a bit of a headache, it does feel just like a bit of a hangover. But just lounging in bed, might get up later.

This chemo thing us definitely doable, I felt worse before with the anxiety beforehand.

Sending lots of love and good wishes to you all

XxxXxx

[Lilyboo]

Thanks for the welcome Jonamo.  Well had the 1st chemo Thursday so an end in sight hurrah!

Wasn't that bad, got used to the cold cap after about 10 minutes then OK.  Just felt a bit spaced out by the end of it.  Have felt sick and headachy a bit like a bad hangover but the medication seems to work well. I just find my mind is a bit hyper, can't sleep but unable to concentrate,Im hoping its just the steroids which I finish tomorrow.  Yes I also only had to have the 1 injection the following day (very pleased about that).  All body hair where its meant to be at the moment but I guess that takes time to fall out!

Eating really healthy much to my amazement the yearning for cake and chocolate seems to have disappeared so far, salads, fruits and berries and loads of apple juice.

I so hope everyone is doing well and remember this is all about reducing the chance of recurrence.

Good luck angels x

[mazbee]

Hi Tara, Sorry you are so upset by your hair loss. I don't think I could do the headscarf thing either but when I tried my wig this am I was so pleased with result. Have you tried one?

Maz xx

[mazbee]

Hello Everyone,

My first session went well, I have a bruise in my hand where the 1st attempt at finding a vein failed but 2nd time fine.  I drunk lots of water as suggested, thanks for that and I still feel ok.  I'm tired but didn't go to sleep till 3 am this morning so no surprise there.  I had anti sickness through the line in my hand and have come home with lots of meds for the next few days.  It's taken a while to sort them all out.  I put the emergency numbers in my phone as I remembered that from the chemo tips list recently posted, must look again at that. An early night is needed and fingers crossed that I'll be ok tomorrow.

i tried a wig this morning and I rather like it!  I hope to have it next Fri.

Hope you went on ok Joanne and love to all going through this hope you're doing ok tonight!

Maz  xx

[Barbie40]

Hi guys

Hope everyone who's had first chemo in last few days is feeling ok. I'm at day 7 after my first one and it's been a tough week with headaches n nausea. I made the mistake of missing a couple of anti sickness tablets on Monday cos I felt alright but paid the price n felt worse. So my advice is to take them even if you don't feel sick.

So the nausea n headaches have passed but wanted to ask if anyone has had numb or tingling toes. Had it since last night and it's getting really annoying now??

Babs x

[Petal88]

Thanks Joanne 1973. Thinking of you and wondering how it has gone today. I am so full of panic I feel breathless and that frightens me all the more. Roll on next week to get it started. I saw the oncologist yesterday and I am to have Herceptin as well as chemo. Anyone else had that? Everyone seems to have different drug combinations at different stages. Hope you feel ok -lucky you, one day nearer the end of treatment. Look after yourself. Petal88

[Jonamo]

Thanks Maire. That's really encouraging.
A x

[Mindy63]

Just want to wish all the Angels best wishes from last year's Crackers. There are still a few of us around finishing off treatment (herceptin) popping the pills (tamoxifen) and recovering from all the treatment.

We had our ups and downs but many of us can't believe we're a year down the line. Having chemo over the winter months was probably as good a time as any. You can muffle up with hats and scarfs without drawing too much attention to yourselves and by summertime there's usually enough hair to ditch the wigs.

Personally I took chemo one day at a time, enjoyed the good days (of which there are many) and gave myself a break when I felt a bit below par.

Take care of yourselves and have a good Christmas.

[Tazzles]

My injections seem to be different again! I have to have them for 10 days from the day after chemo - and they bloody well hurt after that amount of time! Had my last one for this cycle last Sunday and after that have felt so much better. I wasn't brave enough to do it myself so my partner does it if he's not working or a district nurse comes. 

Good luck to everyone starting chemo this week. Just think of it as one day closer to the end of this nightmare. 

I'm going to celebrate Christmas properly next summer when this is all out the way. Can't really think of it now. I can't think of much else at the moment except for the hair loss. Still, once its gone its gone and then I can just focus on trying to look as normal as possible. My head scarf thing went straight to the back of the cupboard when it arrived yesterday - horrid!

Big hugs to all xx

[SJB]

It is interesting to see how different hospital/regions do different things.

I'll have to have those white blood cell injections for 5 days from day 5 after chemo. My friend is going to give me them as she is a qualified nurse, so she can do it after she finishes work.

I ordered some bandanas and also my Limbo plastic sleeve to cover the PICC line yesterday. The Limbo sleeve costs about £17 if your hospital doesn't hand them out, in case anyone needs to know. Went to my GP and had a flu jab, filled out the form to get free prescriptions for 5 years and came away with a bag full of prescription medicines to help me with things to come. That was cool.

CT Scan on Saturday 14th, bone scan on Tuesday 17th. Hair being cut very short on Tuesday 17th. The only date I don't have is my first chemo session. They were meant to ring with that yesterday, so hopefully today I'll know. 

Someone who doesn't know I'm ill asked if I was ready for Christmas yesterday. I just laughed and said yes. Christmas, what's that? It's going to be a funny one in our house this year!

[setareh]

Well done marion3. I had my injection in my arm. The nurse said I can do it in my arm or stomach.  Take care and don't forget to drink lots of water, eat something you like and rest well xoxox

[Tracy1967]

Good luck Maz and Joanne with your first chemo tomorrow - drink plenty of water before, during and after as this really does help.

Take care all December angels

Tracy XXX

[Joanne1973]

Hi Marion, well done on getting over the first one. Hope you don't get too many of the side effects. Make sure you rest up when you need to xxx

Hi Maz, welcome new Angel! I'm also starting tomorrow and am feeling quite sick and nervous tonight! But we can do this. Sending lots of good wishes your way xxx

So good to hear you're feeling fine jonamo xxx

[mazbee]

Hello everyone, I'd like join this Dec group.  I've been for my pre assessment today and start chemo tomorrow at 12 o'clock.  Been very scared but the staff have been great and I'm really prepared now even if still anxious.  My main concerns are the vulnerability to infections and losing my hair means a great deal to me.

SJB  I wasn't shown the room where I will have the chemo tomorrow but watched a dvd of it all.  However, when I was in the waiting area for the 1st time on Tuesday (long boring story) I thought it rather depressing.  Lots of people there had been waiting for up to 2 hours and some were talking in loud voices about their problems/ ailments etc which was depressing and quite frankly I wasn't that interested!  There was one poor woman almost in tears and the place was in semi darkness with a TV turned so low no one could have heard if they wanted to.  However as the room emptied and others arrived the atmosphere seemed to improve or maybe I just got used to it.  Today though the same room didn't look that depressing at all.  I don't think you should worry, it may not be the same when you go again and if it is well you might cheer them up!  Good luck anyway.

I really appreciate this forum, it has helped me a lot so far

best wishes Maz

[Jonamo]

Well done Marion, hope you don't get too many side effects. Make sure you do take all your anti sickness medication even if you feel ok.
It's funny how different hospitals each do things differently. My injections for the White blood cells was given every day for 5 days from day 5 after chemo, but my friend had the same as you, ie 1 injection 24 hours after.
I am now on day 9 post chemo and feeling really fine.
A x

[marion3]

One done seven more to go! It was fine had it through a canular! I feel a little "spacey" like I've had a few drinks too many. I have lots of anti sickness medication to take, which they said to take regularly to stop it before it happens, also some steroids and an injection which I have to do tomorrow in my stomach (raises white blood cells) ready for the next one which is unfortunatley on the 24th December. 😩. Good luck to everyone starting it's not too bad.

[setareh]

Thanks Jonamo, I wasn't very well last night, was sick five times and had headache but since 10am I'm fine. Yes one is done 🙂 5 more and then back to normal!!!

I'm waiting for nurse to come for injection and then will go for a walk

Have a great day angels

Lots of love

[setareh]

Thanks marion3, hope everything goes well with your first chemo.thinking of you 

Big hug