October Optimists??? 2013

[Biddlybee]

That is great news Sam, relax now xxx

[MonicaB]

Thats great Sam - happy for you.

Onwards to your onc appointment and finding out the full treatment plan.

Monica xx

[alabamasam]

Well good news is that I am drain free !!!!
Now I can enjoy my weekend without have to carry that stupid bottle round with me. Next appointment not now till October 30th with my oncologist so that will be when I find out my treatment plan
Hope everyone has a good weekend
Sam xxxx

[royster1]

Thank you everyone for your warm welcome. It's comforting to speak to others in the same boat, especially as many of you are having fairly positive experiences so far. 

Have a good weekend everyone and good luck to those who are having treatments in the coming days.

I'll contact Lulu and join the Facebook page.

x 

[sarkev123]

I meant to say I'm a day ahead of Helen not Monica! And royster not Royston (too much corrie) Chemo fog! Which isn't affecting me yet (I don't think) but is what I blame everything on!

Yes bridget paddy is back to normal, being a little firecracker! I'll have a look at Facebook...a world I have kept my distance from up to now. Have you got your date for your next round?

Thanks Anne I'll have a look for them headscarves...sound good and cheap!

Hugs to everyone Sarah xx 

[apandy]

Sarah.

You can get some headscarves from Annabandana that your don't have to tie, that are elasticated at the back with a sort of bow effect. Very easy if your are in a rush! You just plonk them on. They only cost about £4.

Anne x

[apandy]

Hi Royster. Your diagnosis sounds identical to mine: triple neg in left breast, grade 2 and no node or vascular involvement. I had WLI and SNB on 30 August and started my FEC-T on Wednesday this week. Good luck for your chemo next week.

I am also a single mother (a twelve year old girl) so we no doubt have the same fears about that. Luckily, family and friends are being great! Take care and lots of hugs.

Anne x

[Biddlybee]

You have a lovely weekend too Monica, ues we have to get out an about while we feel good. All the best with your next dunking xx

[MonicaB]

Welcome royster1 - glad you could join us here. One by one we're all having our first treatments and its so helpful to hear how everyone is getting along. It is a daunting thing, so I totally get that you are feeling apprehensive, but we have this forum for support with all the lovely oo ladies.

I had my flu jab at the GPs this am - no problem. The nurse gave it to me and was telling me about some support networks in the local area. I'm open to everything/anything that will make this journey easier - so was thankful for the advice. I love hearing from friends in the outside world too - totally unconnected to this. I had coffee with a friend yesterday and it was FUN to be out and abouting and having a good chat. I didn't feel much like that in week 1 or 2, so for me week 3 has been a good one.

Getting ready for round #2 next week. Assessment on Mon and then if all is ok, #2 on Wed. lol - its all about the calendar.

Good luck everyone and have as good a weekend as you can

Monica xx

[Biddlybee]

Hi Sarah, sounds like little boy is ok again now thank goodness! Glad you are ok too. Re fb - go on go on go on.... Might be a bit scary tho' - pic of my shaved head in there lol x

[sarkev123]

Hi everyone. 

Sorry I don't get to post on very often, very hectic in my house with juggling playgroups and cancer stuff! Ha!

Welcome Jill and Royston, hope you feel welcome in our group.  I'm a week down from my first fec (a day before you Monica so I'll keep hair loss situation updated ). Haven't been feeling too bad at all! 

My hair is so long and always has been, however thinking I'll get it cut short this weekend, then shave it when it starts falling out.  Keep reminding my four year old daughter it's coming out so hopefully she won't get a shock, my son is only 21month so as long as I feed him and play with him I don't think he'll mind!

I'm booked on lgfb in Nov, really need someone to tell me how to tie these headscarves coz I never look like Kylie when I try.

Enjoy your weekend lulu and everyone else. Seriously thinking about joining fb coz think I'm missing out! 

Sarah x

[alabamasam]

Hi Royster
Welcome to our group, I've not yet started my chemo yet as I had to have a second surgery but its looking like mid November. There is so much support and advice on this forum and with us on Facebook xxx
Sam xxxx

[Biddlybee]

Hi Royster, welcome to the group, yes there is a lot of useful info and advice on here. All the best with tues. I had my first FEC on 7th. Feeling fine. Bit nauseous the first few days, but not too bad really. Make sure you take all your meds and loads and loads of water. Xx

[Teffy]

Hi lulu
Enjoy your long weekend off, you deserve it xx

[Teffy]

Welcome Roysyer1,
you will get plenty of support and good advice from all the lovely ladies on here , I have.

[Lulu34]

Sarah iv sent a couple of pms hope you can find me. Xx

[The]

Glad to hear Lulu! That's a result! Enjoy your days off Hun xxx

[Lulu34]

Hi tracy all went well today..... Hoping it continues like this as so far its very doable! Now got a few days off till next tues.

Royster im a T N girl too theres a few of us here. Iv had bc before and I didnt cold cap but now on a different treatment and wont lose my hair this time so iv dyed it bright pink.

If you fancy joining our fb group drop me a pm and ill tell you how to join up.

Take care x

[The]

Hi Lulu hope it went ok today Hun and you have min SE xxx

[The]

Hi Roaster1 welcome I'm glad you have joined us. It is normal to get anxious the closer to the day but As you can see from our posts we have all had quite positive experiences so far! And I am sure yours will go well too. My advice is to drink loads of wAter tea or whatever you like before during and especially after to flush it out to minimise side effects. It has worked ok for me so far.

I am using the cold cap it wasn't as bad as I thought I just made sure I took a big mug into chemo unit so I could have hot drinks I held hot tea in my mouth while it first went on for a few mins and took a paracetamol .after five ten mins you acclimatise and forget about it . The time went quickly as my sis came with me and we had a packed lunch and the nurses talk to you when giving your drugs . My reason for giving cold cap a go was I wanted to look as normal as I could for as long as possible and if I could keep my hair it was worth a shot at keeping it. I know it will be difficult if it doesn't work but at least I gave it a go .

We have a Facebook page if you would like to join us on there where it is less formal and we are sharpening stories about ourselves and photos advice support ext. just private message Lulu with your full name and user name and she will sign you up

Love Tracy xxxx

[Guest user]

Oops forgot to add... I didn't cold cap. I hate being cold at the best if times but it was the additional 2.5hrs in the hospital each time I didn't want to face for something that still isn't guaranteed to work. But there are ladies on here that have gone for it so don't listen to me!! x

[Guest user]

Hi Royster, you'll find lots of welcome here. I know what you mean about the kids, mine are 7 and 4 and it's all I can think about, but kids are more resilient than we give them credit for. I've had my first treatment and it wasn't as bad as I was fearing. Everyone here is so supportive and lovely x

[royster1]

Hello all,

I'm new to the forum, I have my first round of chemo next Tuesday. 

I was diagnosed with IDC and DCIS of the left breast in August and had lumpectomy and SNB on 9th Sept. Results of surgery were Grade 2, Triple negative BC with no LN involvement or vascular invasion. Treatment is FEC-T 6 rounds followed  by a 3 week course of radiotherapy and an 8 day radiotherapy 'boost'. I'm a 43 year old single parent with two children age 11 and 7 and am very worried about the impact that my treatment will have on them.

Planning to try the cold cap if I can tolerate the cold! Anyone cold-capping at the moment?

Feeling very apprehensive as the day of the first treatment gets nearer......

[Biddlybee]

Just had my hair cut really really short eeekkkk but actually I dont mind it! Clippers R Us now. Hubbie did it, and I just did his too god help us.....LOL pic to go on fb xxx

[Guest user]

Monica, I'm only on day 6 so a wee bit behind, might get another couple of weeks if I'm lucky! I've got a wig appt booked for next weds so will see what options they have there. Everyone on FB is rocking their wig hope I can pull it off (the look that is, not the wig!)

[Biddlybee]

Yes Good luck Judith! Xxx

[MonicaB]

Helenwig - I'm on day 16 today - are you are few days before that?

all the best x

Monica

[alabamasam]

Good luck for your treatment today, hope you are ok xxxx
Sam

[The]

Good luck today Judith. Hope to hear how you got on and how smoothly it went! Xxx

[Guest user]

Hi Jill, pleased you found us, it's hard welcoming people to the only group they never want to be part of but welcome! I've found the advice and support here really lovely x

[Guest user]

Big step Monica, well done I'm pleased it has been positive for you. My hair still feels ok, how long are you post FEC? Just trying to get a sense of how long my hairdryer will be in use. Enjoy experimenting with hats/head warmers xx

[Jill1969]

Ps- the next person who tells me I look well, I swear I will scream! Just a minor irritation in the big scheme of things lol!

[Jill1969]

Thanks ladies, it will help me having similar people to link with as others are kind but don't really understand what you go through. I have had a few side effects, first weekend was the worse which gave me constipation, nausea, a bit of a sore tongue and the worse was horrendous joint and muscle pain, not a part of my body didn't hurt. Since then I've alternated between loose bowels and diarrhoea and gritty eyes! Oh and bladder irritation was also there the first weekend! Saying that I feel 200% better this week. My oncologist did prescribe a neutrophil boosting injection 24 hours after chemo and on day 5 I was given 7 days of antivirals and 10 days of antibiotics along with the 3 days of steroids around each treatment! Seems a lot but if it protects you through the treatment it's worth it! I'm ready for the hair thing and have got wigs, buffs and beanies in preparation, but that part isn't easy! Saying that, I'm normally I'm a highlights every 6 weeks and straighteners every day sort of a girl! So I wouldn't want to keep the hair at any cost because if I can't do it as I like it I wouldn't be happy.
I am seeing this from the other side really as I'm a Colorectal nurse specialist for my job, hugely different being a patient! But as I work with large groups of ill people I can't work through the treatment ( if the first cycle is anything to go by, I don't think I could!). And to be honest, being diagnosed with cancer does make you prioritise, so on the days I feel good, I'd rather spent it with my boys not at work!
Luv Jill x

[apandy]

Hi

Welcome Jill, 1969. I hope you lke our little group and come over to Facebook too!

I had my chemo yesterday and woke up at 2.00 am, hence posting this at 4.45!  I'm going to go back to bed now and see what happens!  Sleep tight.

Anne  xx

[The]

Thanks Lulu I will ask when I'm up there next week xxx

[Lulu34]

Sam i have my ganetespib on tues and thurs each week for three weeks then get 1 week off.... Its initially for 12 weeks... Last two are on xmas eve and boxing day.... Happy Christmas LOL. If its keeping the mets stable then i can stay on it longer... Even for years apparently! Hope you get rid of dracula tomorrow too... Must be drag carting him around with you.... I only hd mine in for 1 night and was whipped out even though it was draining more than 30mls.

Hi Jill welcome to the OOs.. As teffy says we have a facebook group that you and any other OOs are welcome to join.... We post pics etc and theres no moderator so we can speak more freely.... Its also secret so only we can see the posts.... If anybody wants to join just send me a pm and ill tell you what to do.

When my hair stared to come out i did get a painful head more than a headache... Not sure that makes sense.... But it was sore on the outside rather than a headache inside.... Felt like i was being stabbed by forks and that was the first sign it was going... The pain lasted a few weeks and then went away completely.... It got sore and en started to come out a wee bit on day 14, by day 17 id lost quite a bit so had it shaved off.

Teffy it doesnt tend to fall out in a oner.... Just a few strands more come out when you run your hand through it.... And then quite a bit more comes away but it tends to come out all over and not just a bald patch however with the CC it may be a bald area if there was poor contact of the head with the CC.

Monica the LGFB session is fab i did it with cancer no 2 and 3... You get shown how to look after your skin and apply make up to make the most of what you do have and improve on what you dont have.... And a free goody bag of products. I was ok with my hair coming out too... But with this drug im hanging on to it so rocking the chemo ward with my bright pink locks lol.

Tracy a side effect of cyclophosphamide (i think) is gritty eyes... It actually dries your eyes out so you may find your eyes are watering more than usual which depletes the moisture and makes them feel dry and gritty... If you tell your chemo ward they should be able to give you eye drops like hypromellose... I still need them since chemo in 2009 but mostly it resolves when chemo is over... If you cant get them from the chemo ward ask your gp.

Hope your dinner helps your bloods bridget and enjoy your book.

Sarah i have sent you a pm with my details fot joining the OOs on Fb.

Take care all

Lxx

[alabamasam]

Sarah so glad you love your new look, I am hoping for the same as I wouldn't have plucked up courage to cut my hair short if it wasn't for this situation we find ourselves in. I just think that if we get used to a shorter hair style that when we do lose it then it won't be long till we have our new looks back xxxxxx

[The]

Inbox private message to Lulu with you real full name and user name and she will add you to the Facebook page xxx

[The]

Welcome Jill glad you have joined us it is a lonely place to be on your own but being in this group is really helping me and I hope it helps you too.

Teffy no hair loss yet! But I plucked a wondering eye brow this morning and there was no resistance so it def on its way. I hope it doesn't come out in bed! Lol what a blooming nightmare!! Just gotta laugh really but I know I'll cry!!! It's one of the cruelest things to go through loosing our hair 😞

Monica yes I agree it's weird and doesn't last long oh well it's not that bad

Glad you like your hair style Sarah ! That's a result! I hated mine when I had mine cut shorter. Sorry to here you not enjoying your last time at work. It must be difficult seeing someone else doing your job in your place but you'll be back there soon enough Hun xxx Tracy

[Guest user]

I have had my hair cut short and love it!! I have always had long hair and would never have had it cut short if it had not been for this, so will be gutted to lose it now. I have decided against the cold cap as you can't colour or straighten hair anyway so figured wigs and hats are the way to go.

I have been back at work for a few weeks but it is my last day tomorrow. Have to say I have hated it. Someone else is covering my job, sitting at my desk with my team so have felt really isolated.  So roll on 5 pm tomorrow!

Good luck tomorrow Lulu and welcome Gill.

Love Sarah

Ps struggling to find the Facebook page???

[Biddlybee]

Welcome to the group Jill xx

[alabamasam]

That post sounded really negative when I read it back, my short hairstyles only won't suit me coz I don't look like Pink but I can dream ha ha 🙂
Sam xxxx

[alabamasam]

Hi Monica
I found a few hair styles that I like, not sure they will suit me but I guess it doesn't really matter ?
Bridget I'm sorry you don't like your short hair
, I doubt I will but ill give it a go, is rather see short hair coming out than my long hair and it will grow back , I loved the sound of your dinner though, made me hungry and I ate a huge dinner.
Anne, good to hear you went on ok today
Lulu, good luck for tomorrow
And welcome to our group Jill1969
Hugs to everyone else
Sam xxxxx

[MonicaB]

Hi Teffy, do keep us posted on how you get along with the look good feel better session. hope it goes well for you.

Hi Jill1969 and welcome! you have really been through so much already with the surgery and now TAC. How has it been going for you? I felt tingling as well and then I noticed that some hair would come away very easily with just the most gentle tug. How about if you took a scarf or hat with you when you went out - just as a backup and you could always return home if you notice a change. I haven't heard that headaches are connected to the hair loss - I didn't experience that. Maybe its something to check with the care nurse? Hope you stay with us on this journey Jill1969. I'm having FEC and I started close to the same time as you. How many cycles will you have?

Good night Biddlybee - hope you have a very restful sleep and feel the benefit of your healthy meal. I wore my wig today too and I kept worrying that it would pop off into the air. lol - its just a matter of getting used to it all - practice makes perfect!

So impressed with your purchase Tracy - hard to beat that 🙂 I had sore eyes in the first week (after cycle 1), hard to describe sort of like eye strain but not exactly the same. And I had a feeling a couple of times in the last day or two that I had something in my eye but the feeling didn't last. I wondered if an  eye-lash had come out or something like that.

Take care, Monica xx

[Teffy]

Hiya jill969
Welcome to the oo's, we have a Facebook page too.
I had my first chemo 13 days ago, and I've had a headache the last 2 days, didn't know if it was a SE or not.
Xx

[Teffy]

Evening ladies,
Monica, I'm booked in for the look good feel better make up thing next Tuesday . I had my blonde hair died dark before I started chemo, because onc nurse said not to have it highlighted whilst having it. So I need a few tips on different makeup ideas to match my dark hair, I'll let you know how it goes.
Tracy have you noticed any hair loss yet, I am losing my lady garden I think today and I keep thinking my scalp is tingling . My hair looks the same but don't know if it feels a bit thinner. I'll have to stop touching it
Oh the joys! Xx

[Jill1969]

Hi everyone , my first time on here so be gentle with me x I was diagnosed in July had WLE and SNB. Due to positive node had ANC on 30th aug. Started TAC 14 days ago and didn't have the cold cap. It was offered but didn't sound successful at keeping at of it and I couldn't cope with patches of baldness, I'd find that worse. It was nice to read what Monica wrote, and I do feel the same, and I have my hairdresser on stand by to take it off when it starts falling out. I feel a bit in limbo right now, not knowing when it's going to happen. I don't feel I dare go out and I keep getting headache and wonder if that's connected??? Does anyone have any thoughts?

[Biddlybee]

Evening oo's , lovely to see your news, hope everyone is having a relaxing evening. I just had liver for dinner, havent had it for years, and it was ok. Had it with onions/gravy/spuds/cabbage. The nurse said it was good for building up your blood. I ventured out today, wearing a wig, felt v glam and wonderful, although a bit self conscious. I dont actually need the wig yet, but have had my hair cut short and I hate it! Met a friend for coffee and a little light retail therapy ahhhh! Friend gave me a book "The Cancer Survivor's Companion". Will let you have my book review in due course 🙂 Night all xxx

[The]

Google luck tomorrow Lulu, glad your feeling ok so far! Long may it continue!

Monica you are a couple of days ahead of Teffy and I and we are using the cold cap. I admire you taking control of the hair situation! Good for you!

Sam hope your drain comes off tomorrow. It sounds like a real pain!!

Anne glad your feeling ok

Hope everyone else is doing ok. I picked up a couple of really nice scarfs from charity shop they were a real bargain 99p each!! I'm def going to look in them from now on.

Does anyone wake up with a feeling of grit in their eyes? The last couple of days this has happened it goes quite quick but just wondered if it was a se?

Love and hugs

Tracy xxx

[MonicaB]

Hi Sam,

I hope this is your last day with the drain - then freedom!

Did you find a short-hair style that you like? Just saw a picture of Jesse J there, she went from long to short and from dark to blonde. Of course still looking as good as ever!  I hope you find a style you like and can enjoy.

I'm not using a cold cap - it wasn't offered and I didn't know much about it to ask if it was available. I really hope it works well for you and for everyone going for it.

I went to the hairdresser a few weeks ago and had my hair cut shorter than usual. I explained the situation to the hairdresser and she was sooooo nice about it. She gave me a new shorter style and we agreed that this is what we would aim for when my hair started growing back. So I have that picture in my mind.

I'm going to save all the ££ I spend on hair for the next while and spend it on a night or two away in a lovely hotel. Will look forward to that.

All the best Sam

Monica xx