October Optimists??? 2013

[Teffy]

Well here goes, just getting myself ready to go for number2 dunking,
Good luck to Tracy, Jill and Sarah (hope I've got that right) who are also at the bar today
Best wishes xxx

[apandy]

Good luck to all of those going through cycle 2 right now. Anne x

[Biddlybee]

Glad to hear Flower, a third of the way sounds very good. That'll be me on Monday. All the best to everyone getting dunked tomorrow xx

[flower75]

Hi ladies - hope everyone is well this evening. Thanks for all the good wishes for my 2nd treatment y,day. All went well and apart from feeling slightly queasy and tired so far so good.

Monica B and Beverly, I hope you're feeling ok after this week's treatment.

Lulu 34 I hope you're feeling ok? You're regime sounds very tough going and all the advice you offer is much appreciated. You've really been through the mill these last few years.

Sarah 1974, Tracey and teffy, good luck to you all tmrw, hope everything goes well.

Dawn 211, welcome. Hope you're feeling better? The scar pain was one of the worst side effects for me too and I was told its quite normal but was also very worried about it. Hope it's eased up a bit now.

Sarah I hope your hairs hanging in there. I had 2nd fec t y,day and I,'ve still got a good amount of hair. Just being very gentle with it but I don't imagine it'll last much longer. Hope yours is ok for Friday.

Hope everyone else is keeping well. As the lovely nurse said to me yesterday that's me a third of the way through chemo and that feels good! Xxx

[Biddlybee]

Hi Sara, welcome to the Oct group. I had my first FEC 17 days ago - feeling good. Keep your arm warm on the way to hosp, it helps the veins. Keep well hydrated before too. The actual chemo session lasted about an hour and a half and was straightforward really, you sit hooked up to a cannula in the back of your hand while they put the different drugs through. They gave me an antisickness pill just before. You then get given more pills for the next 3 days plus some extra antisickness pills and laxatives. Take all the pills as prescribed, when they tell you to. Drink loads and loads of water. I felt pretty queasy for a couple of days, but wasnt actually sick. Then on day 4 I was queasy and pretty green again, because i thought I didnt need the antisickness pills any more. But by end of day 5 and day 6 I was fine. Some funny tastes - tea and also bananas tasted awful, but are ok again. Hope you sail through ok, it really seems to vary from person to person. X

[Sara42]

Hi all,
I'm due to start my chemo on Wednesday, FEC-T and was wondering what to expect. Recovery from my mx and DIEP reconstruction has been slightly problematic, I was due start my chemo tomorrow but it was put back due to an infection.
Any advice would be welcomed.
Thanks
Sara

[Janey160359]

Hi Beverley. Well done for your first dunking at the bar....how's that for a novice?.
Getting to grips with the jargon already.
Thanks for that reassurance regarding the cold cap. Really want to give it a go but wasn't sure how uncomfortable it is.
Hopefully I can stand the pace and it's good to know that the nurses are there to help make it a bit easier.
Would really like to keep some hair for the Christmas period..
Hope you have a good nights sleep tonight and hope no SE's

[royster1]

Sam, I would never have considered having my hair cut short if it wasn't for this treatment, I was stuck in a style rut! But it has surprised me that I actually really like the short look and all my friends and family love it, so maybe take the plunge and go for it!!

xxxxxxxxx

[alabamasam]

Hi Beverley
Thanks for sharing your first treatment with us, it is really reassuring to hear that it went well especially with the cold cap. I had decided to get my hair cut then changed my mind but now hearing you say you had done this makes me want to go for it 🙂
I hope you continue to feel well and those pesky SEs leave you alone xxxxxx
Sam xxxx

[sarkev123]

Pleased you're back safe and well Beverly...take care of yourself xxx

[royster1]

Hello ladies,

I've been very quiet since joining the forum, busy getting myself prepared for my first round of FEC and having my hair cut. I went from a shoulder length bob to a short 'do' and really like it! It takes 10 years off me! It has put my mind at rest that I can get away with having short hair.

I had my first round yesterday with the cold cap. It all went very well, not too traumatic at all. The first 10-15 mins of the cold cap were brutally cold and quite painful, but once I got past that bit it wasn't so bad. I just snuggled up warm under a fleecy blanket, drank lots of hot drinks and distracted myself with a pile of trashy mags.The actual treatment itself was fine, although I felt sad knowing what was pulsing through my veins.The nurses were fab, there was endless drinks and food offered and overall a good experience. I had a bad night's sleep last night, felt a bit 'wired' not sure if that is the effects of the steroids or just anxiety. But feel absolutely fine today, obviously a bit early for main side effects to kick in, but hoping they won't be too bad when they do. Many of you on here seem to have been ok with side effects for your first rounds.

Good luck to all going for their second rounds - hope they are as positive as the first.

Sarah - good luck for Thursday - hope your experience is a positive one. At least it will be one round closer to the end of treatment.

Beverley xxxxx

[alabamasam]

Hi Sarah, yes you are probably right, came out of the blue but there is so much going round in my head that it has to affect us somehow.
Everything is crossed for your hair for Friday xxxxx

[Biddlybee]

Prayers said for your hair Sarah! Have a good night. I am on day 17 today, and I have still got about 95% of my crew cut hair still hanging on. Sam hope you never get one of those migraines again xx

[sarkev123]

P.S. Please say a prayer for my hair everyone!  Meant to be going to a reunion Fri night and don't fancy wearing a wig. That'll be day 15 for me, already had it cut into a long bob so fingers crossed xxx

[sarkev123]

Orr lulu, sorry you've been through the mill the last few days...keep ya chin up hun and stay strong as we all know you are. 

Sam I'm sure you're feeling unwell because of all the stress and anxiety your experiencing at the moment.  I think it gets to us when we don't even know it.  I also have previously had no problems sleeping but keep waking up during the night! I do get to sleep fine (8.30 last night ), but woke at 12.30-5am! Had to get up with the kids at 6! I'm sure there's subconsciously loads going on in my tiny wee brain!

#knackered, but aren't we all! Ha!

Sarah x

Petition signed 

[alabamasam]

Thanks Helen, this was the same, completely out of the blue. I don't think I've ever had a migraine before and if that was one well I don't want another. I couldn't manage to keep painkillers down so gave up in the end and managed to sleep but woke up at 2a.m. I need to go to my GP to book in for the Flu jab, get sick note etc so i will ask if maybe they have some medication i can have in case this happens again. My OH just thought i had overdone it but i've been out and about already after my op and not had this happen.
I do feel better today but not pushing it xxx

[HelenWig]

Janey, not sure I have any teeth advice!! My flare ups are rare and usually last a couple of weeks I've got a regular check up in a month so will ask then although I'm wary of any additional treatment whilst I'm on chemo, that's my priority I'd rather put up with achey teeth. I'd definitely go to my dentist now if I were you just to ask their advice.
Sam, I had my first and so far only migraine about 4 months ago totally out of the blue, one day I couldn't get out of bed, could barely open my eyes and again was so sick. After 2 days of this I went to GP who prescribed magic tablets that made it stop!! It was so random I don't even know if it was a migraine but that was my (and my gp's) only explanation. Migraleve might work for you but it has codeine in which just made me sicker 😞 feel better soon xx

[Janey160359]

Hi Sam
I know what you mean about SE,s and not yet started chemo.
I have found a ridges in my nails and mouth is dry ahhhhhh
Paranoid or what.....Need to get it over with.
Despite that hope you ok and thanks for the wig links....
I had my flu and pneumococcal jab yesterday and was told it was the right time before chemo. My OH having one Friday so thanks for the tip.
Been on November Newbie site and missed you yesterday x
Take care and chin up
Janey x

[Janey160359]

Hi Helen
I am due to start chemo mid November and concerned regarding my wisdom tooth. It is fine at the moment but does flare up when I am run down.....I recently had a flare up when diagnosed because of the stress. I am going for a dental check up on Friday before I start chemo but worried if chemo will make it worse. They refused to extract it a few years ago as the flare ups were rare and there is a risk of nerve damage to chin during operation...If it becomes a problem I am hoping that antibiotics will be the treatment because do not want to delay chemo. Any advice would be appreciated.
Hope the sleeping improves. It's rubbish when your tired, it gives me the most bad headache and I am sure it must be awful when managing the SE's next day....Have you tried the sleep apps they seem to work for me but not on chemo yet. Ahhhh I am very apprehensive about it to say the least !
Good luck with the wig workshop.
Take care Janey

[alabamasam]

Morning everyone, I had an odd day yesterday as i went to Manchester with my OH and sons. We walked about a bit, went to a few shops and to TGI's for lunch but i felt really tired so we headed home. I then ended up in bed for 2 hours initially then developed a migraine which has never happened before and i was so sick and back to bed for the night. I still have the headache this morning and all i can think is jeez I've not even started chemo yet and i already have the SE !!! Did this happen to anyone else, did i just overdo it yesterday ?
Sam xxx

[HelenWig]

I've got a sore mouth not helped by a wisdom tooth that has just decided to have a little growth spurt which it does every few months! My mouth looks quite red inside. I've been using oraldene mouthwash which helps I think, can't stand pineapple sadly I have eaten lots of chocolate, perhaps that helps lol! I'm ok getting to sleep but at 4, ping! Wide awake. I've never had a problem sleeping before, don't know if it's an SE or just brain on overdrive. I've got a wig workshop today, thought I should get something sorted before it all goes. Have a good day everyone xx

[Lulu34]

Hi dawn my mouth was very sore from about day 4 to 11, the rest of the time it was just sore but not very!

I found pineapple did help mine but made it worse, but i had difflam mouthwash, oral balance saliva replacement gel, bonjela, nystatin, soft head tooth brush kids strawberry toothpaste... Didnt nip but tasted yak! Also was on fluconazole tablets.... Still had a sore mouth on all that but onc reminded me if this bad on treatment then think what it would be like with no treatment.


Xx

[Dawn221]

Thanks Sarah, it's strange how your scar is hurting again, isn't it? I was just starting to feel normal again after surgery as well! Oh well I suppose it means everything's doing it's job. Hope you feel ok today xx

[Dawn221]

Morning girls, thank you for your support. Feel a bit better thank you. Got friends that want to come and see me but can't be bothered to socialise, is that normal? My mouth feels really sore, any suggestions? I'm eating a lot of pineapple which really helps. Does your mouth stay sore all the way through chemo? Hope everybody's doing ok this morning.

Signed petition

Dawn xx

[Lulu34]

Hello girls

Sorry i have been missing in action for a few days... Before my lunch on saturday niticed a few spots on my chin and thought how bloomin annoying to get spots when im off out for lunch.... Anyway i had a lovely time with the GABBies..... The Glasgow breast Buddies...... helen r you may be interested!

After that came home to edinburgh and had takeaway with my sister, my son and mt friend and a few glasses of wine.


When i was getting ready for bed i noticed more spots on my chest and also more on my chin and forehead and after a few c lles back anf forth with hosp i ended up in the assessment unit at 2.30 -5.30 and sent home with some piriton for the rash which they think is caused by my treatment.


It spread a bit more over scalp, ears and back and spent sunday and monday feeling sorry for myself.

But was back infor treatment yesterday no 3 of 18 and to stay on piriton but also got some steroid cream and dermol cream to wash with too... Thank god the rash has started to subsiding but have been warned its highly likely to come back and maybe even get worse after this weeks dunking! Poop

Anyway came home and fell asleep and actually have slept really well last night... So having a wee day recovering and friend coming iver this after noon and then back to do it all again tomorrow!

This is quite a tiring regime but if it works ill stick with it but if im gonna look like a giant spot for ever then ill need to reconsider my option after my CT scan in 6 weeks.

Anyway still not quite in happy bunny land but getting there.

HELEN R im from edinburgh if you fancy joinging the gabbies let me know we meet for lunch every couple of months.... We are from edinburgh, falkirk, skye, ayrshire, lanarkshire and everywhere in between

DAWN welcome to our lovely wee group hope your feeling a wee bit better and things not going too badly for you now.

FLOWER hope your dunking went ok and yiur nit feeling too awful today.

TEFFY hope your flu jag isnt too bad... I got a sore arm after mine... Always get it for a day or two then im fine again.

To all you new ladies or facebook virgins we have a lovely supportive FB group which is sompletely private and we can be more open and even share pictures of things like wigs or in my case... Rashes!

If you would like to join our group please pm me on here and ill tell you how to join up!

Love and hugs ladies x

[The]

Yeah it's good to have some company to pass the time my sis came first time and my OH is off work so coming this time . I know what you mean about the hair after cc lol I've got a hat to pull on lol. Good luck with your bloods I had my flu jab a couple of weeks before I started chemo but know its best to have it just before your next dose at least you will be protected when the bugs start floating around !! Xxx

[Teffy]

I know what you mean, I thought I would be ok this time, but I'm a bit anxious. Like you say it went so well last time, just hoping it will be the same. My daughter is coming with me this time, so someone to chat to, and help cover my hair when I leave, it looked a bugger when I left last time with that conditioner on lol
Ps. Signed petition
hope your bloods are ok. I'm having flu jab in the morning before bloods. Xx

[Biddlybee]

Petition signed!

[The]

Hi Teffy yeah I've been getting palpitations too I only really notice it when I go to bed and I get bit scared thinking there's something wrong. I will ask as well when I go up to give blood tomorrow. I thought it could also maybe be anxiety. I am getting anxious about the next one just want it to go as well as the first!! XxxTracy

[Teffy]

Hi Tracy,
I've not had any bother getting off to sleep, but I do wake about half 4 most mornings. My sleeping patterns are all over the place. I've had quite a few palpitations which I've never had before. I'm going to ask the onc nurse about it. Can't believe we're nearly at our second dunking. Let's hope we continue to have few SE x

[The]

Found this in another thread. It has 520 signatures, but think we can do better than that!

Free dental checkups and sight tests for cancer patients

Responsible department: Department of Health
All cancer patients should receive free dental check-ups and free sight tests for five years, i.e. during all treatment, as per the prescription exemption certificate received. Especially as chemotherapy is known to cause dental problems, and tamoxifen is known to cause sight problems.

Copy and paste the link below into your address bar:
http://epetitions.direct.gov.uk/petitions/53515

Pass it on!!!

[The]

Hi all

Just wanted to ask if others are experiencing weirdness when going to sleep. I feel like I might have heart attack or something at times and am so fidgety finding it takes ages to get off to sleep. I've been putting off going to bed as don't want to go through this experience but I'm getting really tired as not going to bed until 1-30am 2-30. Is anyone else feeling like this?

Thanks Tracy xxx

[The]

Hi Janey

If it is a newer version I would think it would be more effective as its newer. Good luck and keep us updated with how you get on xxx Tracy

[sarkev123]

Hi dawn, welcome to the group. 

Day 12 of first fec for me.  I had a bit like morning sickness for the first week, and now I feel practally back to normal but keep going a bit light headed. Still have full head of hair, however I know this won't be for long. I was also told to keep a diary as I have a review of the past 3 weeks the day before my next dunk. My mastectomy area is also feeling sore and my seroma fluid has changed shape,  I rang my bcn and she said this was normal and it would probably happen throughout treatment. 

Hope you feel better soon.

Hope lulu and flower are feeling okay? 

Sarah xx 

[Teffy]

Hi Dawn and welcome,
My onc nurse told me to do a bit of a diary for my SE so that when I go back for number 2 on Thursday, she can adjust my meds as needed.
I found that the first week was the worst, queasy, constipated, fuzzy head, a bit like I was far away with the faries sometimes and really tired, but from day 10 I have felt nearly back to normal.
Hope your SE calm down soon and you start to feel a bit better.
Take care x

[Janey160359]

Hi Tracey

Thanks for your support

I dont think the hospital where I am being treated has the Paxman cold cap. I was told they had updated to cold air cap...never heard of it so not sure how effective it is.

I know what you mean about treating your hair carefully, I havent started chemo yet but treat my hair like it might fall out already ha ha.

Thanks for the tips will definately do my best to keep my hair and keep those grandkids from pulling my wig off.

Take care Janey x

[Biddlybee]

Hi Dawn, sorry to hear you are feeling rough, hopefully it will pass soon. Rest and eat when you want and drink loads of water, it really helps. Xx

[apandy]

Yes, Dawn, I know what you mean about the fuzzy head.  It's not exactly a headache but a feeling of being squashed!  I know it sounds daft but last night I kept changing sides because my head felt uncomfortble when I lay on one side too long!

Anne x

[The]

Happy Birthday salkei hope you have a great day!

Dawn welcome to our group. Sorry to here you are having a rough time of it. As Monica says please do speak to your BCN before having your next dose as they can change your medication to help you with the next one. I did feel light headed at times and very dizzy on day of chemo along with feeling sick constipation ( took senecot)red faced for few days sensitive to smells and horrible taste in mouth but these were only for a few days then subsided. I'm hoping no 2 on Thursday will be the same.

Dawn we are on Facebook as well just send Lulu a private message with your real name and user name from here and she will join you up. Hope you feel better soon !

Lulu and Flower75 hope it went ok today x

Hugs to all Tracy

[Dawn221]

Happy Birthday Salkei 🎉xx

[Dawn221]

Thanks Helen. I'm the other way round to you had two lots of surgery, single mastectomy in the end on 20 August, just started to feel normal again, went back to work for a bit, now started chemo so feel rubbish now, but managing to eat ok, so I can't be as bad as some people. My work have been brilliant, in fact they just rang me and said not to worry and told me to rest and look forward to our Christmas lunch 😃. xx

[Dawn221]

Hi All
I too feel guilty about not working, although I only work 12 hours, but my work have been brilliant and told me to take as much time off as I want. I don't know about anybody else but I find I can't concentrate on anything either, except to watch hours and hours of recorded Eastenders (my husband hates it, haha). My head feels all fuzzy, is that normal? Did enjoy beans on toast with grated cheese on top today though! 😃. Keep strong everybody xx

[apandy]

Hi All

I too felt a bit guilty about being off work for so long. My surgery was 30 August, a few days before the start of the new term (I am a teacher) so I couldn't go back at the start of term. My surgeon said he didn't advise returning to work between treatment and chemo so I decided not to. A couple of weeks after my op (which was a WLE and SNB), I was starting to feel very good and quite rested, but I don't think mentally I could have coped with a return to school and the stresses of the job. Now, of course, there is the added risk of infection. I have decided to stay away until after my radiation treatment, meaning a return perhaps in the summer term.

Rationally I know we shouldn't feel guilty, and I know that it's actually better for the kids to have a reliable cover teacher than me popping in and out, so I think I have made the right decision. Also, although I have come through my first cycle reasonably well, I don't feel I have the energy to get up and go to work, even though it is only 3.5 days a week.

I am going to try to get the most out of this break and then re-group once it's all over, possibly thinking about early retirement too, but let's see how it goes.

I hope everyone is feeling ok today. Have had a bit of indigestion and diarreoh over the last 48 hours, but am not doing too badly,

Hugs,

Anne x

[HelenWig]

Hi everyone. Happy birthday Salkei! Hi Dawn, I am now on FEC+11 and feel "normal" constipated with a sore mouth but the nausea has gone. Keep on top of the pills and rest. Food little and often helped me as well. Don't feel bad about being down, this is tough.

I've also stopped work for now. I have all the chemo then an op and rads to come so goodness knows when I'll be back. I do miss it but my employer has been brilliant. Although I'm going to have weeks of doing "ok" it is too hard to do my job like that, it's a bit all or nothing which is why I've just said I'll stop then they can plan cover etc.

Good luck for everyone going for round 2 and Sarah for round 1, once it's done that's one off the list!

Virtual hugs to everyone xx

[Dawn221]

Hi MonicaB

Thanks for your advice, it's so comforting to talk to people in the same position. I did mention to my BCN my scar hurting, apparently it's normal but nobody knows why? I think I'm just feeling a bit sorry for myself as I'm probably not feeling as bad as some people do. Thank you for your support xx

[MonicaB]

Hi Dawn221

glad you posted - sorry things have been so bad for you this week. The side effects are so tough at times. I felt sick for the first day or two after the first chemo. Then the nausea/sickness settled down but I felt tired and could not eat much for a few days. But then I found that it lifted after about 5 days from the start and although I was still tired, I got my taste buds back. It was a big shock to the system to go from feeling great the day before treatment to being straight into side effects. But I tell myself this is what I have to do for the next few months.

How sore is the area around the scar - is it a new feeling? I've no medical knowledge myself, so can't advise. Did you mention it to the care nurse - they're bound to have some good suggestions.

Dawn221, I had my pre-assessment for the next chemo yesterday and met with the doc then. It was a good chance to go over how the first round went. The doc is going to give me some additional tablets to help with nausea/sickness for this time. I'm just mentioning this because hopefully you will have the same chance to report back on how things have been for you. And hopefully the docs will be able to advise or give you something to make round#2 better for you.

Take care and be good to yourself. Let us know how you are getting along. Hugs xx

[sarkev123]

Hi everyone and happy birthday sally. Hope you have a nice day.   Hope all has gone well for you today flower, and you too lulu.

Hi Monica, I know it's really difficult dealing with all these emotions but hope those of you who are feeling guilty for not working...please, please, please try to focus on getting well.  This is only my opinion but I think it would just be an extra layer of something else to deal with. At the end of the day hopefully in a few months time this will all be a memory that we will no doubt never ever forget,  and I'm sure will change us in some ways.  

I know we're all different and some people choose to work but if not try to enjoy it...why not! 

Hugs to all Sarah x

[Dawn221]

Hi, I'm new to this, but had my first FEC chemotherapy last Thursday. I feel I'm not in control of my body anymore, feel sick, tired, constipated, disgusting taste in my mouth, keep crying! And my scar hurts where I've had my mastectomy, anybody else feeling the same? Does it get better in the next few days? I know they say it's culmative so God knows what I'm going to feel like after 6!! Appreciate your comments xx

[MonicaB]

All the best for Thur Sarah_1974. They will look after you in the clinic and just ask if there is anything worrying you. We'll be here too - safety in numbers xx

Good luck to Teffy Jill and Tracy too - we're all moving along with this. And Lulu - hope alls going ok with you.

Happy Birthday Salkei!!! have a good day with your pals. Nice to have plans for the new year too - yes why not have 2 birthdays Its great to have things to look forward to when this is over

xx

[salkei]

Morning lovely OO's

Will be thinking of you on Thursday Sarah xx  Just remember your imagination makes these things seem a lot worse.

Off out to meet up with pals as today is my 53rd birthday!  Planning on having a big blow out once treatment is over in the New Year, if the queen can have 2 birthdays so can i lol!