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Marvellous Marchies 2012 Moving on

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Re: Marvellous Marchies 2012 Moving on

Wow ladies a busy few hours.

Sorry I can't remember names, Caren your definitely no 1 for that, how do you remember them all I can't even remember when I use ipad and iPhone together!

Just wanted to say good luck to all for tomorrow. We are all singing from the same hymn sheet and the support here is unbeatable. The worries and angst come in waves, but once the first session is done you realize it's really doable.

Think I've now got to the stage that if I have any concerns or doubts I'll ask choccimuffin as she has now become our unofficial mentor and advisor, I just live all your knowledge :))

Winter socks if you can't face talking to anyone yet then keep posting here that's what we are all here for to help each other.

Remember Marie drink loads and loads and take medicine as stated and it'll make it easier.

Again sending hugs and love to everyone of you lovely March ladies.

Wishing everyone a good nights sleep.

Love Carolyn xxx

Sorry for any typos I'm on phone as OH is using iPad ( doesn't he know how I need to post!!)

chascat
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Re: Marvellous Marchies 2012 Moving on

Ladies, posting from my phone so can't scroll back to check names, just wanted to wish everyone who's starting tomorrow well and wishing you few se's.

Love Lydia x

chascat
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Re: Marvellous Marchies 2012 Moving on

Wintersocks, I can so relate to what you're saying. Like you I can't deal with the medical professionals, I'm too afraid of what they might tell me, I had an eye test last week and even that turned me into a gibbering wreck, such is my anxiety now, I'm terrified of what the future may bring and my 4 year old daughter growing up without me. Even though I know bc is very treatable all I think about are the horror stories, which we've all heard, but for everyone of those there are many many more good news stories, once this is over I want to live well and enjoy my life, I don't want to be constantly fearing it will return, I expect I'll have counselling once I've finished my treatment. We all deal with things differently, I'm very much a glass half empty kind of person, I think for my emotional and mental well being that needs to change. As the other ladies have said, please ring the helpline, they really are a fantastic support, even if you just cry down the phone as I've done, they still manage to offer reassurance, and they really know their stuff, don't be afraid, that's what they're there for.

Love Lydia x

ChoccieMuffin
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Re: Marvellous Marchies 2012 Moving on

Wintersocks, when things have got really tough for me, I often find it easier to talk to strangers whose job is to deal with whatever is bugging me, rather than "burdening" my friends and family. (Yeah, I know, they wouldn't see it as a burden but I did, and that's what counts.)

Try giving the helpline here a ring tomorrow. They are used to what you describe, and having another human being who won't judge, criticise or tell you what to do can be SUCH a relief.

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Re: Marvellous Marchies 2012 Moving on

By the way I start my first session on 22nd March

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Re: Marvellous Marchies 2012 Moving on

wintersocks hun - I really understand what you are saying, I think I am more terrified of the chemo than I was about the Cancer diagnosis, and the way I am dealing with it is pretending it is happening to someone else, I feel one step removed from it, and just occasionally it hits me full on and I go to pieces. We all have different ways of dealing with this thing, and no way is right or wrong. I however find talking to my friends helps me lots.

I dont have a partner as such but a BF of 2 years who I find very hard to talk to about this, as, like you, I think I will scare him off. So as I said I use my close friends for emotional support and only occasionally 'test' him out with tiny bits.

I think also knowledge is powerful, and the fear you feel could be put into perspective more by talking to people who have been though it or have years of dealing with ladies who are going through the same things. Please try and talk to your BCN, I really think they are helpful, or why not call Macmillan? They can allay a lot of your fears I am so sure.

One day you will look back at this and be giving others the benefit of your experiences, but until you are strong enough, just listen to others on this site and take comfort that we are all here for each other. Holding a hand out to you from the ether.....
Gabby

wintersocks
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Re: Marvellous Marchies 2012 Moving on

Hello to all March ladies,

I am too about to start chemo on March 23, my 1st session. I am due to have a MRI on Weds.

I am utterly terrified by the whole BC thing and am finding I cannot ask any questions to the medics or anyone else. I cannot even talk to the BCN, or anyone in my family or I won't answer my friends calls.

I feel utterly stunned and all I can do is feel fearful and watch TV, thank goodness for Sky as there is aways some trash on.

The whole chemo thing doesn't scare me too much (perhaps it should?) It's the months and years following when I am sure I will always be thinking it has come back. I have 2 kids 18 and 14, and my partner (not their Dad, he walked out 2 years ago) is very supportive bit I am afraid to 'lean' on him too much in case it drives him away.

I am trying to be positive, and the other women on here are an inspiration but I am just not there....

WS

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Re: Marvellous Marchies 2012 Moving on

Back from 1st chemo session, not too bad have come home armed with a bag of meds for all occassions!!! Am waiting to have portacath fitted, but the wait is quite long, so opted to have it done venous route initially so can get started.Now I am just going to await and see how my body responds!!! Am not going back to work during chemo as am a community nurse and not always the greatest places to work in.
The actual wait for chemo was worse than having it. The staff in the unit were great and a friend ( another nurse) stayed with me, we also got a couple of cuppas and biscuits thrown in for good measure!!!
Good luck everyone,
J

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Re: Marvellous Marchies 2012 Moving on

Hi BerylS,

Good luck for 2morrow. I had my second session today. I have been sent home with 3 days of steroids and 2 lots of anti sickness tablets. I did the injections last time - i too was scared but they arent as bad as you imagine. I did my own and the needle is very fine, you inject in your stomach. I could have had the district nurse come out but thought id give it a go myself - luckily i have plenty of spare skin to do this. Good luck for 2morrow you will be suprised how when you go for the second one you will be much calmer. My BP, temperature and pulse were all down from the lst time i went. xx

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Re: Marvellous Marchies 2012 Moving on

Hello It's Me Again,

Waiting too

Thanks for your kind words and support - I will remember your motto tomorrow. Don't know what they will send home with me in the way of drugs but they will give me anti-sickness and hopefully something to help me sleep because I'm such a light sleeper. If not then I will ask for something. Nothing been said about any injections that some of you have been talking about. They don't sound very nice.

Must go now to get ready to go out. I will post before I leave for the hospital tomorrow. Hope everyone gets a good nights sleep, especially those who are getting their first and second sessions of chemo.

Take care and best wishes.

Beryl XX

waiting_too
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Re: Marvellous Marchies 2012 Moving on

Dear Beryl and other ladies starting tomorrow,

The day's positive energy is reserved just for you all. In my experience the fear was 100 times worse than the reality. ASK for WHAT you NEED.

Hi to the rest of the ladies, and I mean everyone even though I don’t write your names.

CM great posts from you – you’re like ‘our ubermum’ with all you experience. I also have a portacath fitted and whilst it hurt until the swelling went town I haven’t regretted it one bit. I’m looking forward to swimming once its completely healed. I’m having 8 sessions so it’s certainly preferable.

I’ve been quiet, through dipping in to read the posts – sorry for Joan and her SE to the injections.

I’ve had a lovely week, feeling really positive, no SE’s and energy back. This is doable. You’ve no idea how terrified I’ve been this last month, a shadow of myself so to come through my first chemo with only about 48hrs when it was really biting and to bounce back so positively is exactly what I need to prepare me for session 2 on 21st March. Like another lady here I just felt relief for the next few days until about day 4. Water, nausea talbets, little food and an occasional sleeping tablet saw me through it.

Clare (Waiting too)

My motto as I’ve come to cherish is ‘ ASK for WHAT you NEED’.

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Re: Marvellous Marchies 2012 Moving on

So sorry about last post I'm all in a fuddle the cancer was 21 mm not cm as stated lol.

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Re: Marvellous Marchies 2012 Moving on

Hello Marchies and new ladies,

Well, back from my lovely walk with friends at Sherringham Park and then to lunch at Felbrig Hall (National Trust sites). Unfortunately, the sun didn't come through but at least it was dry. Called my chemo suite just to make sure that I have everything right in my head for tomorrow. Glad I did because I though they said I would be there for 5 hours total, now confirmed it should be about 3 to 31/2 hours, which is much better. They don't like you have a visitor with you all of the time because of limited space. OK to have someone with you to settle you in then they can go to the waiting/sitting room or leave and come back etc. They're OK with someone popping in to see if you are OK from time to time but not permanently. Also you get a free parking card to display on day of treatment. The problem is finding somewhere to park at our hospital, especially later in the morning/day. Will get OH to drop me off, collect the card and then run the parking guantlet! They have already given me a sleeping tablet to take tonight, so I can get a nights sleep and then going to give me something to relax me before they start pumping the drugs into me.

Off out tonight to play Bingo with my lady friends, more a social evening really - we're not Bingo fanatics. Sometimes I win so that's a bonus. Been trying to drink plenty today to get more hydrated, as recommended and will continue to try throughout. Don't think there's anything else to buy. Thanks for all your advice and recommendations they have been a great help.

In the morning I will be all over the place and in a way it will be better to get in there and get it done. Then I will have some idea and will hopefully start to deal with it as and when it comes. Gosh I wish it was that easy. Keep looking at the veins in my hand and hoping that they don't have any problems. Never had a problem donating blood and the veins in my hand look good - here's keeping my fingers crossed. Trying cold cap and will keep you posted on my first experience and how long it lasts before I rip it off! Carmy, KT, Janelle and Wolf I will be thinking of you as well tomorrow and hope you get through it OK as well.

Love to everyone.

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Hi, I am new to forum. I lihadn't Barnsley and have had a mastectomy to remove 21cm Lobular cancer. My sentinel node came back positive so had axillary node dissection, the remaining 21 nodes removed were all clear. The cancer was Oestrogen reseptive so I will be starting Tomaxifen when chemo completed. I pray we will all get through it with minimal side effects.

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Re: Marvellous Marchies 2012 Moving on

Hi ChoccieMuffin,
Thanks for your information, i feel much better about having it now. I have to admit that i didn't have to fight for the port, i'd never heard of it. The chemo nurse said that they find it hard to get a good vein after about the 3rd cycle and she said i'd regret it if i didn't have one of these ports - sounds like I've been very lucky to have been offered it.

They are giving me a local anaesthetic with a mild sedative to relax me, apparently i'll be awake but i won't feel or remember anything.

I'm having radiotherapy as well after the chemo is finished and apparently i have to keep it in until after that is finished too, then i can have it out.

Thanks again, jules

Hi KT23,
I start my chemo on Wednesday and I'm going to be using the Paxman cooling cap, the leaflet i got about it says it has approx 70% success rate (depending on this, that & the other of course) so I figure it's got to be worth trying.
My chemo nurse told me to take 2 paracetamols before i leave home for the hospital so they'll take the edge off any headache the cooling cap brings on.
Good luck for tomorrow, i'll be thinking of you!

megsmum
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Re: Marvellous Marchies 2012 Moving on

Just back from my pre chemo asessment, the staff were lovely and friendly had my bloods taken, got lots of info plus wig leaflet but can,t sort appt out yet as have to be given a no. from the hospital to quote for my freebie. I was also given a form to fill in to get free parking its for all chemo patients and not just for chemo appts.I saw the scalp cooling machine (it,s pink) and doesnt look as scary as i thought, I,ll give it a go. I,m still really really emotional and cry at the drop of a hat it,s really starting to p...s me off now I,m hoping that when i get the 1st chemo out of the way on wednesday i,ll settle down. ha ha.
I hope everyone else is doing ok

Care n. I won,t be working during treatment as i work on a busy female surgical ward !!!! and unfortunatley there,s too much risk not only of infection but can you imagine the poor ladies coming in for Mx and having me to deal with too. 🙂

take care xx

Care_N
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Re: Marvellous Marchies 2012 Moving on

Hi everyone, and welcome to Janelle, Kojak, Marie, Jackie, Kika-k and everyone else who has joined us.

I was expecting another sunny day today, but it’s grey and overcast here in Hertfordshire. I enjoyed the sunshine yesterday though, and went out for a lovely long walk in the country, and a nice pub lunch. I feel absolutely fine now, day 12, and feeling quite guilty about being off work this week. Is anyone continuing to work through this, and if so how is it going?

Joan I’m so glad you’re feeling better after your horrible experience with the injections. I had a back ache following my last one, which I think might have been because I did it a couple of hours earlier than I had the day before because I was going out to meet a friend. I will make sure I leave it at least 24 hours if I have to do them next time. It sounds like your wig is lovely – the woman in the wig shop assured me that you, me and Carolyn have all chosen different styles!

Carolyn, hope you found something to buy. I definitely do know what you mean, I find I don’t know what to wear now I’m not going to work, I am just living in jeans, but getting really bored with them.

Maggie May it’s good to see your message, I wondered how you were getting on, hope everything is going well.

Janelle the best advice I had was to have plenty of drinks before and after chemo. I’m sure that helped reduce the se’s. I also made the “Go Cake” which was really quite nice – a bit like bread pudding. (That might be because I did it wrong, but I enjoyed it!) And I can vouch for it working… The recipe is at the end of the Top tips for starting chemo post in the Undergoing Treatment: Chemotherapy category.

Kojak good luck with your portacath, it sounds like it will be much easier for you, once you have it fitted.

Chascat, the false eyebrows looks like they could be really good – let us know what they’re like if you order some!

Liz and Supersue hope you start to feel better soon, my appetite went too, but that didn’t last long! I found what I really liked drinking was Bovril, which I never had before chemo, I drank coffee all day every day, but I only have one cup a day now, I still need my first thing in the morning cup, or I can’t get up!

Good luck today Marie and Angelherts, and tomorrow Beryl, Carmy, KT, Janelle and Wolf, hope it goes really well for you.

And everyone who has started, hope the se’s continue to diminish! Now I must do some cleaning, I’ve put it off long enough!

Love and hugs to all
Caren xx

chascat
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Re: Marvellous Marchies 2012 Moving on

Ooh, just found these whilst looking at wigs, got to be better than what my pathetic efforts will be!

http://www.simplywigs.co.uk/catalogue/eyebrows/index.html

poppyD
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Re: Marvellous Marchies 2012 Moving on

hiKT23

I am starting chemo prob wed I intend to try the cold cap if you look at the paxman site it gives lots of info. I personally think it worth a try

Good luck

Love Poppy x

kt23
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Re: Marvellous Marchies 2012 Moving on

Hello ladies,

Haven't rea this for a couple of days do have alot to catch up on 🙂 Hope your all feeling well and not experiencing too many side effects. I start my chemo tomorrow so it's all starting to dawn on me. Was wondering I anyone has any advise? Also I am still undecided if I should use the cold cap or not?

Xxxxxx

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Re: Marvellous Marchies 2012 Moving on

Just got back from 2nd lot of chemo - BP and pulse rate down from last time - knew what was coming this time suprising how much calmer i was this time. Now pleased to say 2 down - 4 to go. Third of the way through - good to focus on something positive. Going to have pic line put in before next one as veins are bit bruised - plus it makes treatment easier. Ordered bandana today in readiness for next bout of hairloss. Need to start wearing wig to get used to it. Good luck with your treatments everyone

ChoccieMuffin
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Re: Marvellous Marchies 2012 Moving on

Kojak, I had a portacath inserted before my first FEC last year, and it has been a real boon. They can take blood from them (well most of them, mine doesn't like bleeding) and they can use it to administer chemo pretty much straight away, so I'm surprised they said they wouldn't do it the normal way for the first time. But it shouldn't be anything to worry about.

They sometimes insert them under sedation and local anaesthetic, or under general anaesthetic. Do you know what they're planning for you? It's a very quick procedure, and if you're sedated they can give you an antidote so you come round pretty quickly. Best not to drive for 24 hours though, just to give it time to work its way out of the system.

I have not regretted for a single second having a portacath fitted. Even though it was uncomfortable, and has of course left another scar, that's massively preferable to the SEs of canula and "chemo veins" that some people get. I went for a port because I'm still on Herceptin and couldn't face having a PICC or Hickman line for the guts of 18 months, as I swim, and wanted to be able to carry on doing so.

Good luck, and well done for persuading them to give you one, I had to really fight for mine.

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Re: Marvellous Marchies 2012 Moving on

Hi,

I'm starting my first cycle of FEC on Wednesday (will have 6 in total) but tomorrow I have to have a 'Portacath' inserted, there's loads of information about chemo on the web but i can't find much from people who've had one of these ports fitted.
The nurse didn't really tell me much about it, just that they go in through my neck (which has me a bit worried) and that it will be too sore to put the needle in on Wednesday so they'll put it in during the operation tomrrow and leave it in there ready (which is really freaking me out).
At least i'm not worrying about starting the chemo though as i'm too busy worrying about the port!

EBHippo
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Re: Marvellous Marchies 2012 Moving on

Morning My friends
Day 5 here too, Supersue - you and me must be on the same wavelength, also have no appetite and everything I eat seems to taste the same anyway, thankfully Coffee is the only thing I can still taste. Felt quite yucky last night and slept upright on the sofa, a bit sore and achy this morning but maybe it was as didnt lie down.

Know what you mean about brain going, I am a typist but have to re-read all my entries now as my fingers have forgotten where the keys are.

First day on my own, so cuddled on the sofa with my laptop, glass of water and a ginger tom cuddled into my side but must admit the boredom is already settling in. Wish it was sunnier outside so I could sit in the garden but its quite cloudy and not that warm.

Good luck to anybody having their first cocktail today, the waiting is definitely the hard part. Sooner started, sooner finished

Love and hugs to you all, liz xxx

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Re: Marvellous Marchies 2012 Moving on

Good Morning all.
Well day 5 here, felt quit yuck yesterday, still no Se's or nausea so thats great i not eating much got no appetite at all managed some ready brek yesterday, going to have some more now,

My body is aching back of neck so sore, my surgery side my ribs down same side maybe is the juice doing its work!

I think my brain is going, not that it was good to start with, took me 2 attempts to log in then i realised i had typed 'good morning' in my user name, theres hope for me somewhere!!!

Read the posts but i not that good at re-posting so hope you all sail through your day and week ahead easily.

I recommend taking a senacot a day as i didn't the 1st 2 days, took 2 after that and had the most tremendous stomach ache all night until i exploded!

Not feeling like drinking my usual 6 cups of coffee either, even after changing to decaf 3 weeks before chemo, i just not fancying hot drinks at all weird!

group hugs for a good day for all xx

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Re: Marvellous Marchies 2012 Moving on

Hi my 1st time on this thread.Enjoyed the sunshine yesterday walking around Whitlingham Broad. Am off today to have 1st chemo session, at NNUH at the moment am thinking like others sooner stated sooner finshed. Am having 6 sessions FEC-T, have stocked up on various bits in cupboards and ordered some scarves online, as don't have appointment for a wig until 23rd March, so may need to cover up a bit by then!!!
Good Luck to everyone else having chemo this week
J

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Re: Marvellous Marchies 2012 Moving on

Morning ladies

A big hug and luck to those either starting today or during the week.

I've been out to the shops already, but you know thatvdisappointedcfeeling you get when there's nothing you want to buy. Never mind I'll have to console myself with a good browse online instead.

I know what you mean about tired Jackie, I felt like all the energy had been zapped out of me, like removing the air from a bag. But if my experiences are anything to go by it only lasted a few days. I'm now day 12 and feel normal, just have to do more waiting around ready for no 2 on 21st.

Weather great here yet, misty and foggy, hope it'll clear to a bright sunny day later.

Have a good day everyone.

Love and hugs

Carolyn xxx

Parsnip
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Re: Marvellous Marchies 2012 Moving on

Morning Marchies,
Hi kk, I'm at the Sussex as well, although unfortunately we'll miss each other as I'll be there Thursday afternoon for my second dose. Maybe our paths will cross at some point. Good luck, they are lovely in there, although its always really warm I have to makes sure I'm wearing layers so I can strip off!
beryl, a walk sounds perfect (much better than housework!) enjoy the nice weather
Joan I'm glad you had a good day yesterday, the sun does help but it's nice to be feeling good as well to enjoy it.
Well I'm off to e GP this morning to sort out this darn throat, I'm very fortunate that my surgery is great at getting me on the day appointments (I have a flag on my file I feel very important 🙂 ) the GP knows me by sight already and I've only seen him 3 times as I'd just moved to the area when I was diagnosed. Am feeling lucky I picked a decent surgery I know they're not all like that.
Hope all you lovely ladies enjoy the day
Xxx

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Re: Marvellous Marchies 2012 Moving on

Morning everyone and thank you all for your welcoming messages - it helps so much not to feel I'm totally one my own with this.

Last night was the first without the steroids yesterday and it was great to sleep properly - I feel tired this morning but it's a different tired from not sleeping - if that makes any sense?

I'm trying to work out what to do about work - I need some normality but also realise I have to give the body a chance to fight this horrible thing - think I'll do a bit from home and see how it goes - I'm lucky that's a possibility but who knows what will happen?

I'm also going shopping this morning - want to make sure I feel ok driving while my dd is still with me - although if I'm not it won't help as she has to get back to work in Manchester!

Have a good day everyone

Speak soon

Jackie x

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Re: Marvellous Marchies 2012 Moving on

Morning all!!

Thank you for your warm welcome.

Megsmum and PoppyD, I am also starting on Wednesday afternoon - which is a bit of a nuisance as I will be fretting all day. Happy to be chemo buddies with you guys!! I am planning to do a little therapeutical shopping in the morning but I will probably end up behaving like a headless chicken and stocking up with last minute bits and bobs for the se’s.

I also find it difficult to remember everybody’s names and who wrote what –still catching up on reading all the posts!

I had an ok day yesterday, went for a walk with my daughter and the dog hoping to have a nice chat with her but bumped into a dog-walker we know and ended up walking together – tried politely to get rid of her (not my daughter) with no success! It was nice dough, most of all for the dog! In consequence, the heat rose later and had blow up with my girl which brought tears to the table and cleared the air – she has been lovely since : ) and I am feeling better too!!! We even had a laugh about me being ‘plastik’ fake hair, fake boobs, fake teeth (I am having a tooth out tomorrow too, yack!)

Gabbylamb, I had my pre-chemo app last Wed and was given my start date there and then, I am in Brighton.

Today I am a bit unsure as whether to call the BCN as I still have a little seroma on my armpit; it seems to go down in the morning but grows as the day goes on! Any suggestions? I am going out for a lovely country walk with a friend and the ‘beast’ and it is such a lovely morning down here that I don’t want to waste it having to go to the clinic for a draining…. Oh what to do….

Hope you all have a good day

KK xx
(Kick tha Kancer)

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Re: Marvellous Marchies 2012 Moving on

Morning to all our ladies,

I'm the first post for today - up with the birds singing, and what a lovely sound.

Originally thought I would stay in today and do some housework but my friend said, quite rightly, that that can wait. Wants to take me to Sherringham Park (Norfolk coast) for a walk and enjoy the scenery. Sounds like a much better idea and no doubt we will have lunch out. Going to see enough of the inside of the bungalow over the next few weeks, so I'll get outside in the sunshine because it looks like it's going to be another lovely day here on the east coast.

All being well I will start my first chemo tomorrow along with the other ladies. Will be a lump of jelly in the morning, got to be there for 11.00.

Hope you all had a good day yesterday and a relaxing nights sleep. Will send a message again later.

Welcome to the new ladies who have joined us.

Best wishes and virtual hugs,

Beryl XX

Off to eat my toast.

Patchit
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Re: Marvellous Marchies 2012 Moving on

Evening ladies
I hope you have all had a good day. I am very pleased to report that is exactly what I have had, my blip on Friday seems to have gone and I am feeling much better. We went out for a walk this afternoon, then sat in the sun in the pub garden. I will just hope to sort out my problems with the injections when I see my Oncologist on Monday week.

Jackie, sorry to hear you have been feeling a bit low and vulnerable. It must be very hard going through this if you are feeling alone. There are plenty of virtual hugs and hands to hold on here. I have really appreciated the support I have had from the lovely ladies who post on here.

Cleosmum, thanks for your post. Its good to think about the other side of the coin and you certainly raised a few questions for me to ask my Onc when I see him.

Poppy, I think they advise you to take someone with you for your first chemo session. Some ladies do seem to drive themselves though and there certainly would not have been a problem for me to drive. Hope you get through the next few days, I know how you feel, but it does pass!

Gabby, I was given my appointment for my pre start session and my first chemo session at the same time. Not sure if all hospitals are the same though, so it might be worth a phone call.

Lydia, sounds like you have had a lovely time with your little daughter! Those memories will see you through the tough times, I am sure! As for the chemo bag, I just took a bottle of water with me and OH bought a paper to read. The time goes really quickly and there is plenty going on to look at!

Janelle, welcome and good luck for tomorrow, second treat already! You can be our ‘leader of the pack’! Make sure you leave the door open and a light on for the rest of us!!

Angelhearts, good luck for tomorrow, big hug for you and here is my hand to hold. Xx

Sueroxy, Danigirl and Newc43, I hope all went well on Friday and that you are feeling ok.

Sorry if I have missed anyone off the list!
Have a good week everyone
Joan xxxxx

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Re: Marvellous Marchies 2012 Moving on

Hope you dont mind me joining in the chats - my first chemo was 20 Feb.

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Re: Marvellous Marchies 2012 Moving on

Second lot of FEC-T tomorrow - lst lot was not as bad as i thought. Had bout of nausea on day 5 but phoned the chemo help line at my hospital and within an hour had a prescription ready for collection at my doctors. Good luck to those starting chemo

poppyD
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Re: Marvellous Marchies 2012 Moving on

Hi Lydia

youve got this far through the process

you can do it and there is nothing wrong with being scared

Lots of love

Poppyx

chascat
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Re: Marvellous Marchies 2012 Moving on

Evening all

My goodness, what a lot of posts! Hope everyone has had a lovely day in the glorious sunshine, what a difference it makes to our mood, long may it continue.

Sorry I can’t mention everyone by name, I admire those who can, unfortunately I’m just rubbish, but my thoughts go out to everyone suffering se’s – especially to Joan, hope things are improving for you now.

Welcome to Kika-k and Reluctantrose and anyone else I’ve missed – I really am rubbish, Kika-k I too am confused as to what to put in my chemo bag, Reluctantrose, I start chemo on the 19th too, also having 6 FEC, we can hold hands and compare notes. My pre-assessment is on Friday, nobody has mentioned a heart scan to me so assuming I wont be having one as we don’t have a nuclear medicines department at my hospital.

I have started filling up the cupboards with all things ginger, manuka honey, travel bands etc, but the terror has not yet arrived, at the minute I’m still of the mind “sooner I start sooner I finish” but I know by next weekend I’ll feel very different. Have felt very anxious this weekend at the thought of it coming back, jumping the gun somewhat I realise. It’s something I’ll have to deal with sooner or later as I can’t spend the rest of my life being afraid of a recurrence, but it’s that horrible stomach dropping feeling when I realise that I have absolutely no control over this and at the minute I’m finding that difficult to deal with. But I’ve still had a lovely weekend, my 4 year old daughter has had a fairy portrait experience today and it was just gorgeous, she looked an absolute picture and we were all delighted with the results – albeit considerably poorer!

Sorry it’s a short post, I’m so behind with all of my emails, present thank you’s etc, am desperately trying to catch up.

Love to all

Lydia x

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Re: Marvellous Marchies 2012 Moving on

Good evenings ladies. What a beautiful day it has been, hasnt it.
Please forgive me that I can't remember all your names and posts, as we March Hares have been a little prolific with the writing!

CM as always your 'year on' information is invaluable to us and we are very grateful for your input during our first doses.

Jackie, im with you with being at home on your own. I think that is what scares me most, and I have started making plans by asking friends who are nearest to be in distance if I can call on them in an emergency. I think the idea of keeping all emergency phone numbers written down upstairs and downstairs is a good idea, and im starting to collect stuff that others have recommended for SE's, again I think I will have some upstairs and downstairs just in case of night time dramas! Its all very scarey stuff isnt it, but if you can have someone to 'nominate' as an emergency friend I think is a good idea. I ency those of you with helpful OH's

Lots of hugs to Patchit - poor you, but Im glad you picking up. We really are in the hands of our ONC's with this arent we, and it seems however much reading, researching and planning, this treatment can take everyone unawares sometimes. I wonder if in years to come it will be seen as unbelievable that we had to go through such things?

I have my pre chemo appointment on 19th so I assume I will start that week, although I havent been given a date which seems odd. I think I might ring them tomorro to ask. Has anyone else not been told a date for starting by this stage?

You guys are keeping my spirits up and I wish you all a good night and NO SE's!!
love
Gabby

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

hi megsmun,

that be great lets be chemo buddies

Poppy x

megsmum
Member

Re: Marvellous Marchies 2012 Moving on

Hi poppy I,m starting wed too so we can compare notes :-))

poppyD
Member

Re: Marvellous Marchies 2012 Moving on

Hi everyone

Hope you have all been able to make the most of the lovley weather and have had good symptom control.

I will be joining you this week starting FEC prob on wed. I wondered if any of you drive yourselves when you go for chemo

really scared of being really sick

just gotta be done

you are all very positive and encouraging

anyone else have diabetes as wonder if any tips as will effect management
good luck everyone

love Poppy xxx

Cleosmum
Member

Re: Marvellous Marchies 2012 Moving on

Hi all.
I finished chemo in Dec (FEC-T), and started having the Filigrastin (spelling??!) daily, but hated being injected every day. Luckily I have medical insurance and could dip in and out as necessary so my onc was happy to prescribe the one off injection (Peg Filigrastin)for me for the rest of my treatment.
I just wanted to warn Patchit that the single dose is not necessarily the holy grail. I had less reaction and side effects with the daily doses as they are spread out- the single one would make me feel like I had really really bad bone ache ( I could feel it inside my bones!) and painfull flu like symptoms for about 4-5days, sometimes I couldn't move and I am a pretty fit 47 year old!!. It also got worse when I started on Tax.However, it was better for me to condense it than having SE'S and a nurse visit every day for 14 days to inject me(my onc recommendeds 14 single ones.)
Also once you have the single one if you have any adverse reaction you cannot stop the treatment as it is a time release formula and keeps working over time, with daily ones at least you can stop having them. If I only had to have 7 I would probably have taken them instead.
Just thought I would let you know my experience of it. I think the SE of treatments are worse a lot of the time - don't get me started on steroids LOL!!!
Each cycle is different though, and what effects you during one will be totally different during the next.
Best wishes to all
Nicki

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Re: Marvellous Marchies 2012 Moving on

Thanks CM that explains the blood count thing. Looks like I have good blood so far, fingers crossed for it to continue. You're a mind of information I think you should set up your own q&a breast cancer sure. Love it.

Carolyn xxx

ChoccieMuffin
Member

Re: Marvellous Marchies 2012 Moving on

I was told that they like neutrophils to be above 1.2 to get away without having injections, and above 1.0 to allow chemo to go ahead. But different units do things differently. I only had injections after the last chemo as my neuts were below 1.0 the day before chemo but went up a tiny bit by chemo day. So they gave me chemo but also 5 days of injections. Didn't have them the rest of the time as my WBC was ok, but the effect of all that poison is cumulative.

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Re: Marvellous Marchies 2012 Moving on

Afternoon ladies

Wow what a beautiful day, the suns shining and that always makes for feeling better. Just put new seed into the bird feeder, as poor birdies ignoring the mouldy stuff I put in when it snowed. Being fed chocolate as well, oh bliss.

Glad you're feeling better Joan, no idea why I'm not on injections, but think I'll keep quiet about that one. Like you though I've no idea what is considered low for White blood cell count, had so much information given over time so maybe missed that one. I just know they'll check it next time through the canula. Totally agree about paying into NHS though, push forvthat single dose as you can't be put into the position of potential se next time and then after.

Can't wait to see people in their wigs, must admit I havnt put mine on for a days.

Your posts are always useful CM, and so glad you shared the year anniversary with us, must admit I can't wait until it's my turn to do the same.

Welcome Jackie, you're a week behind me and I felt really tired from Monday through to Wednesday, so being on your own will be fine just remember to drink loads and crest as needed.

Hoping your feeling better Parsnip, and Supersue here's to limited se's. Lovely to hear from you Maggie, keep us all posted with your treatment.
well off to enjoy the wonderful weather, love and hugs to all.

Now where has he put the rest of that chocolate ...

Carolyn xxx

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Re: Marvellous Marchies 2012 Moving on

It's a beautiful sunny day here on the East Coast (Hunstanton) and I'm off to play indoor bowls at our local liesure centre this afternoon. Not very good at it but it's really enjoyable. Meeting a couple who we are very friendly with, and Jean is very supportive having been through this herself 10 years ago. I know she will be there for me ready to take me to wherever I need to go to give my OH a break. True friends are priceless and we all need them in our lives.

If you can enjoy the day and the lovely weather we are having today. Here's hoping for many more. Mind you the lack of rain is worrying.

Besti wishes to all.

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Hi all,

I had my first FEC on Thursday and am feeling a bit sorry for myself today although the se aren't as bad as I thought - but somehow it all feels very real now and I can't kid myself that this is going to be a walk in the park. But reading this and all the support and understanding from you all who are in the same place has made me cry but feel so much better..... so thank you all so much!

I'm sorry I can't remember who's said what so far - I'll have to take notes for next time but I can understand about being on your own through this. I'm single with a fab 27 year old daughter but she lives in Manchester while I'm in Milton Keynes. She came down on Thursday to be there this first time and will be able to come down at some time during each treatment when I work out when will be best but she's going home tomorrow and I'm a bit scared of being on my own - particuarly at night I think.

I'm sure I'll be fine after tomorrow though!

Anyway thanks again for all the really positive comments - I'm usually positive too but just occasionally .......

Jackie x

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Good Morning ladies, what a lovely day! Thank you for all your lovely posts and kind words following my drama of Friday night! I have really appreciated the support you have given me. I will put an update at the end of this post!

Beryl, hope you are getting on ok with the wig and scarves, I am also not a hat person, but am coming round to the idea! I have kept a daily diary since day 1, and think it will be handy to refer back to in the future.

Megsmum, what a lovely boss you have, not! Hope you made him feel sufficiently awkward!!

Welcome, Kika-k, we all know how you are feeling, but you will soon be on the other side of your first treat. The waiting is worse than the doing!! Don’t worry, plenty of hands here to hold. I am sure your daughter will be a great help to you and you will go on this train ride together. Enlist her help when you can, walking the dog etc, it might help her to cope with all this happening to her mum if she is involved at every step of the way.

Caren, glad you got the wig sorted. I’m sure you will soon get used to it, but you also have the scarf option so can just go with what feels better for you. I also picked mine up, although I didn’t think I would make it in view of Friday night’s events. Decided to go anyway and I am glad I did. Had lovely cakes in the tea shop (thanks for the info), its worth the drive to Ware just to go in there! Anyway, really pleased with my wig. I put it on last night when OH had popped to Tesco. He actually noticed when he got back (amazing, I had visions of walking round with it on and he not even realising!). He was actually taken aback! Wow he said, looks like I have a new woman!! So its thumbs up from him, I wasn’t expecting such a positive reaction, so I am really happy about that!

Welcome, Reluctantrose, hope the scan goes well, as others have said, it’s a simple procedure.

Supersue, glad you are feeling ok, long may it continue! Hope the small has gone (you sure it wasn’t the pilchards?!). Glad you have managed to get the single injection, that’s what I am going to push for next time.

EBHippo, REALLY glad you have coped with the nausea thing. That’s great and it must give you confidence for next time that you can cope with it again. I am sure you will be fine tomorrow, the cats will keep you on your toes, demanding to be fed and tickled! Daytime tv will pass the time and a nice snooze should top the day off for you nicely!

Parsnip, I’m sorry to hear about your sore throat. Have you tried pineapple? Glad you are getting away for a few days at Easter. It must be really hard with a small child to care for while coping with your treatment. Big hug for you and hope things get easier as time passes.

Hi Maggiemay, nice to hear from you again, hope your treatment is going well. Yes, the injections are to boost the white blood cells.

Chocciemuffin, thanks for your lovely informative posts! It’s really good to hear from someone a year down the line, very positive and helpful! I also keep looking at the Kindle, I am expecting a bonus from work soon so that is on my (long) list of potential purchases! As far as the white blood cells go, I know my hospital checks the levels each time you go for treatment. I thought the level had to be over 5? I thought 2.4 was quite low? Maybe I have that wrong then! Hope so, I really don’t want to be delayed! I was expecting it to be low as I am on day 11 today, so slap bang in the middle of the cycle. I thought it would be low at the moment, then increase during the third week. I will ask about whether I need the injections, I am fairly sure Carolyn isn’t having them and she is at the same hospital as me and having the same regime. If I do need them then I really want to push for the single dose. I know its expensive, but surely a night in A&E, coupled with tests, x-rays, endless medication and doctor / nurse appointments all add up in cost! And, quite frankly, I am 51, have worked all my life and paid my NI contributions, have never needed to call on the NHS previously to any great extent (apart for 2 children!), so aren’t I entitled to have what I need?! Aren’t we all entitled to that, regardless of what has happened to us previously? Isn’t that what the NHS is all about really? I can totally understand that as a cost cutting exercise, if the 7 days of injections are half the cost of the single dose, then yes, there is no reason why I shouldn’t use them. But I have had big problems with them, so I am really hoping they will review it next time. I couldn’t go through all that each cycle!!

After all, if I have to take more medication to combat the SE’s I get from the injections (didn’t know you got SE’s from them!), then other meds for the SE’s I might get from the SE medication (tummy problems from diclofenic), then ultimately does that mean that the SE’s are worse from the SE meds or are the SE’s worse from the injections themselves?

Sorry for rambling! Getting it off my chest! I feel much better today, I had the last injection yesterday (Hooray!), no aches or pains as I have been on diclofenic and paracetamol, but I haven’t had to take any today. It’s a beautiful day, I am now going to get dressed and I think we will go out for a walk later.

Have a good day everyone. Enjoy the sunshine if you can.

Hugs and xxx

Joan

PS, CM, you have the award for the longest thread thus far, Angelhearts, think I have just won the trophy back for the SE paragraph! Ha ha!! 7 in one sentence, bet you can’t beat that!!!!!!!!

Dee101
Member

Re: Marvellous Marchies 2012 Moving on

Morning Ladies, a beautiful sunny day today!

Joan, sorry to hear you have had a bit of a nasty time, hope you had a restful night & are feeling a little better today.

CM, thank you for the advice, I have an appointment tomorrow with my lovely Onc, so will ask him what he thinks.

Dee xx

Parsnip
Member

Re: Marvellous Marchies 2012 Moving on

Morning Marvellous Marchies,
Hope everyone is doing ok. The sun is just coming out here but my plans to take a trip out today have been scuppered by this sore throat that still hasn't gone away, only 4 days til dose 2 I was hoping to get out a bit more. So instead I'm making oxtail soup and sorting out photos sat on my own as my boy is with his dad this weekend.
EBHippo, I'm sure tomorrow will be ok alone, sometimes it's nice to have a bit of space but it's also nice to be distracted from it all somehow. Maybe you could get a friend to pop round for half hour or just talk on the phone to someone to break up the day. Hopefully the nausea will be less tomorrow as well and you can try to do something just for you.
CM thanks for the holiday tip, I'm hopefully taking my boy to a caravan park at Easter with my parents, they're driving and if the worst comes I can sit in the caravan whilst I know my boy is having a great time with his grandparents. Unfortunately I don't get any "good" weeks as I'm on a fortnightly regime, onc was brutally honest and told me to write off the next four months! I'm trying to take each day as I can and use what energy I have in spending time with my son. Keeping fingers crossed I still keep getting good days at least 🙂
Xx

mollie43
Member

Re: Marvellous Marchies 2012 Moving on

morning ladies,

Reluctantrose i am starting the same weeks as you but on 22nd, i had my mx on jan 27th but have had a really horrible seroma that has been drained for the last five weeks hopefully it won't need to be done again, but getting it checked tomorrow.I am also having a heart scan tomorrow.Ihad my assesment two weeks ago but go back on the 19th for another.We will be able to follow each others progress.

Hope all you ladies that are already having the juice are ok, you are all so upbeat. well off to the supermarket and then hopefully some sunshine it's gorgeous down here on the south coast debbie x