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May Moonbeams

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Re: May Moonbeams

Oo i'm upside down! How did that happen?!
Janet I didnt try the linseeds but they are on My list.
Quick question! How long after results do you see the Onc? I'm due in breast clinic 2nd. It seems some of you have been waiting a while since your ops. I know the guidelines are that chemo has to start within 6 weeks if your last op. Don't want to wait that long though.
Good luck tomorrow Marie x
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Re: May Moonbeams

Panacea, I will let you know the outcome
Marie xx 🙂
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Re: May Moonbeams

Hello moonbeams
Redcap, its been a beautiful day here in London too, and I've spent it pottering about getting a few things sorted out. I know what you mean about wanting to get on with it.

Nanniereeree will be interested to hear about your visit to the Onc tomorrow, I'm seeing mine Thursday afternoon.

Caz hang in there.

Deborah x
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Re: May Moonbeams

Hi Everyone,

Melrose, glad you are better, did you try the Linseeds, I call them my Trill
Poemsgalore, thank you for coming over with your support, you must be so pleased you are nearly there x
Nanniereeree, good luck with onc tomorrow, that will be another step further for you x
Caz, glad you are better today, that water looks inviting. Wonder if we will feel like swimming when on chemo x
Martha, good luck with your op, we'll be thinking of you. Had mine 4 weeks ago and hardly even think about it x
It has been lovely and sunny here today which I think makes everyone feel better. I sat in the garden reading but chemo seems to be on my mind the whole time, just want to get on with it now.
Love to all. Redcap (Janet)
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Re: May Moonbeams

Hello to all May Moonbeams (loving the name)

I just wanted to drop by and wish you all the very best of luck with your upcoming treatment. I am sure you will all be great 🙂

I'm currently in the waiting room for my op, then rads but I've been told to expect discussions around chemo. If (no when lol) I do, it probably won't start until July, but I thought I would follow your thread and get some helpful tips etc. I can't find the AAA thread but I did find the Valentines Thread.

Good luck ladies 😉
Martha xxx
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Re: May Moonbeams

Hi everyone hope you are all well,
melrose great news hope you feel a little better every day.
Ive had a bit of a mental wobble yesterday and today was going along fine then suddenly just got lot of anxiety and felt im sitting here waiting for chemo to start and it will be 14th may at the earliest and it just felt like such a long way away .
i like to feel as if im doing something positive im finding it tough to just sit here for another 3 wks anyone else getting fed up my head is taking me places i dont want to be though i rang the unit and spoke to one of the nurses and feel more settled today .Take care everyone xx caz
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Re: May Moonbeams

Melrose, glad you feel better after draining and other bodily function exits 🙂
I have my appt with onc tomorrow afternoon then will ave a plan of action , will feel better once I know what is ahead. Bought two bras today from a local shop well known make and they cost me £10 more for the two than if I had bought them on line. Will be ordering from website in future as lady I work with has also had Mx so we will share the postage
Caz d have you noticed how much cancer is advertised on the telly and billboards I won't say I never took notice before with mum and dad both dying from it I ha e always donated and seen the ads but now I've been dx it seems they are everywhere!
Lexi42 don't have any cording but it is very uncomfy I had my mx and node clearance on the 25th march and its still sore. I have that same feeling as if my ssticks ticking out about a foot more than the other side lol I know it isn't but it feels like it.
marie
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Re: May Moonbeams

Hi you May Moonbeams, what a fab name. Sorry you all have to be here but I know you will all support nd comfort each other throughout the coming months. When the Valentines started, we kept a list of all the members names and what date they were to begin their treatment - it's all gone awry now though, due to postponements for various reasons. But very good luck to all of you, especially lexi for the 30th. I shall be at my oncology appointment on that day prior to my 5th treatment. Was originally on Fec-T but due to Tax being a right swine with me, I'm going back onto Fec for cycles 5 and 6.

Big Hugs
Poemsgalore (Kath) xxx
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Re: May Moonbeams

Hi Ladies
Feel so much better now the site has been drained. And have had bowel movements today so nausea has gone. Yeah! Pam I've stopped taking the meds as you say I think they didn't help. Paracetamol seems to dull the discomfort so will stick to them.
Hope all you Moonbeams are doing fine xx
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Re: May Moonbeams

Hello


Just wanted to let you know that the name of this thread has been changed as requested.


Best wishes


June, moderator

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Re: May Moonbeams

Hi Melrose my appointment isn't until 30 April but feel better than this morning, I hope you feel better soon and get the relief you need. x
I take Linseeds. You can get them in any supermarket in the seed aisle I think or maybe near the pulses. Only about 90p Try a dessert spoon full, the bits will get stuck in your teeth and have plenty of water with them. You won't have any stomach ache. I hope you get some relief soon. x
Sunshine I hope you are ok x
Caz, unbelieveable re the film. Did it turn out to be a good film in the end? x
Dinner beckons. Have a good evening ladies xxx
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Re: May Moonbeams

Hi melrose,hope you get the wound sorted pretty quickly ,hopefully they will sort the bowels out as well you have enough on your plate without cording as well so hopefully it wont happen .
Well i went to the movies for a bit of light relief ,hadnt read what it was about,just knew it was light romance set in italy with pierce brosnan ,so was taken aback when opening scene is main character talking to her oncologist after last chemo for breast ca lol is there no escape!
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Re: May Moonbeams

Talking of relief I suffered from this it is probably the painkillers ask if there are any alternative painkillers also obtained sachets from gp I totally sympathise with you it makes you feel far worse although not of serious concern to the medics. Hope you get sorted best wishes Pam
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Re: May Moonbeams

Hi May Moonbeams!
I hope sunshine and Redcap's appointments went well. Let us know.
I'm not having a good day. 6 days after mx and feels like I've a new boob growing. And the pain and discomfort is nauseating. Off to hospital to hopefully have it drained and get some relief. Talking of relief I still haven't 'been' ( said in a quiet whisper!) since my op. Tried loads of different things and am expecting to explode at a given notice. Who suggested linseeds? Can I get them from the supermarket?
Luckily no otherproblems at the moment. Good to know about cording, although obviously notnice for those who have it. Its good to be aware of what to look out for.
Xxx
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Re: May Moonbeams

Morning everyone - sunshine i hope you come on tonight with great news re your egg harvesting today
Redcap all the best for your appt at least you will know exactly whats happening treatment wise .Im up for my preassessment on 7th may i have seen the onco and now the delay seems to be the ward actually being able to get me started which i find bit frustrating.
im heading out to see love is all you need apparently its a" slice of sheer life-affirming magic" just what the doctor ordered i think -Take care caz xx
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Re: May Moonbeams

Morning everyone,

Feeling jittery this morning and haven't even seen the Oncologist yet. It's the waiting game.
Love your profile pic Queen Drama.
So I have been teling myself, I may have a sore throat, dry eyes, be or feel sick, feel shattered, be constipated or have the runs and lose my hair.
We can cope with that ladies xxxxxxxxxxxxxx
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Re: May Moonbeams

Afternoon Ladies

I'm from the december 2012 thread and im at day 12 post my last chemo. you can do it!

If you want some tips from an old pro as it were here goes:
1 You will get a sore mouth and Difflam is fab but i found that using corsodyl mouthwash the day before chemo and for 10 days after really helped
2 ask your doc for omeprazole as it really helps with the stomach probs
3 i wasnt sick once - but was very nauseous. sipping full fat coke through a straw and eating haribo really helped
4 ask your doc for movicol - gentlest constipation cure !
5 Rest rest rest ! do what your body tells youto do!


good luck!

QD
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Re: May Moonbeams

Hello everyone, like the May Moonbeams, shall we ask the moderator to change the thread name?

Alex & Caz, I had cording, and found the exercises tough and it set my teeth on edge to feel it pull when if I forgot and reached out for something. Strangely though after my second op it really improved, and I think when I was under they must have had to move my arm out of the way and managed to stretch it for me! That might seem mad, but I can't find any other explanation for the sudden improvement. The cording then moved between elbow and wrist and had gradually improved so now just a tiny bit now and again. Still a bit of stiffness in my shoulder though and have another pysio appointment.

Hi Pauline, hope things are going well for you and all the Angels.

xx
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Re: May Moonbeams

Hi lexi funny you mentioning cording its driving me a bit mad i have thin strip about a cm across from my axilla down to my wrist normal activities are no bother but if i stretch or do the physio exercises it is very sore feels very tight i feel if i could just snap it all would be ok(wont be trying that anytime soon)
It isnt raised but when i press gently on that area the whole way down it feels v bruised im going to hosp on tue to see physio as i only had the 4 glands out i need to get it sorted before i head back after chemo for the full clearance xxcaz
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Re: May Moonbeams

Hi Cazd, Marie, Deb, Emma, Redcap and Sunshine - so there is six of us now then! Just catching up - I might be tempted to get a verjazzle kit (I'll try anything once!), don't like liquorish though so won't be going there.
I Like the name May Moonbeams, seems to conjure up a picture of fairies dancing around toadstools in a moonlit glade for some reason, but I don't think that's a bad thing.
Hope everyone's doing okay today.
I managed to plant some Aubrietia today, only three plants, i have a very large garden and its mostly me who does it, so I will probably overdo it at some point, but its so frustrating to see the weeds growing and bushes growing untidy! Sorry, calming down now.
Anyway, like I said, I've just caught up with everybody's posts and was wondering how those of you who have had node clearance are doing? I'm 3 weeks post op now, most of the swelling from the left over fluid has gone down now, but does anyone else have that cording thing? When my arm is at full stretch you can see something stretching in my armpit and I can feel the stretch right down to my wrist when doing the walk up the wall exercise. It's strange and then there's the numb bits they're weird too, still feels like I'm squashing something under my arm, anyone know what I mean? It's not painful, just strange.
Alex
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Re: May Moonbeams

Marie im a good irish girl the vajazzle will be going on my bald head and nowhere else!
enjoy the lovely weather the sun is out and just back from a lovely beach walk with my dogs weve another few days grace before we become bald, vomiting, bowel obsessed mad women xx take care everyone caz
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Re: May Moonbeams

Caz would love to know what is in your vajazzeled kit? (Can't spell lol )
May moonbeams sounds lovely
have a good day everyone and enjoy the sun if you have it 🙂
Marie
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Re: May Moonbeams

Hi all,

I had heard that some of the drugs can give you the runs so we won't know if we are coming or going LOL.
For constipation, I find the best thing is a spoonful of Linseeds. They taste nice and nutty and are gentle on the old stomach. Don,t know if it is ok to eat them.
Have a brilliant day everyone. Redcap xxx
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Re: May Moonbeams

Morning everyone will be thinking of you tomorrow jill
,looks like mays moonbeams is becoming popular(like the idea of shining through- emma)
Have been reading through lovely AAAs threads for ideas and tips and its been so useful .Could i just let u know one thing i found out i had said to my sister that i was going to get licorice for constipation once tment started and she told me she had seen an article about possible side effects esp for over 40,s so googled it and low and behold certainly does sound that for some people it may cause probs (they will be selling it on the top shelf with lads mags at this rate lol)
Its lovely to know that we have this forum and my family, friends and girls from work have been brilliant i could not ask for more. xx caz
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Re: May Moonbeams

Hi Caz,
Yeah I've had my surgery, had a MX and the surgeon took 4 lymph nodes, 2 of which showed micromets so they did a full ANC!
Thankfully they were all clear!! I have quite enjoyed the fertility treatment, it has given me something to focus on which I'm hoping will bring happiness in the future!!:-) keeping everything crossed that they get some eggs tomorrow!
Hi Redcap, I'm so grateful for this site and the support and words of wisdom too!! I know I will need it as I have been feeling pretty lonely lately! The temptation is to shut the rest of the world out until I feel more like me again!
My husband has been fab but his Dad has been in hospital with a chest pains and a blood clot so I don't want to dump all my crap on him!! I am trying to go into work as much as I can for now as this helps to pass the time and at least makes me feel as though I am being constructive!!:-) on my own though, it doesn't take much for me to be I tears - guess I can blame hormones though!!:-) Fab excuse!!
Emma, I love May's Moonbeams for a name!! Sounds perfect!!:-)
I think I need to make myself a shopping list ready for chemo! Going to read through the fab AAA thread again for tips!! I see black nail varnish needs to be on there!!:-)
Love to all you strong ladies - it will help hugely to lean on each other and to not be alone on this journey!!:-)
Big cyber hugs to you all and to all those who popped in from other threads to wish us luck!!
Jill xxx
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Re: May Moonbeams

I'm overwhelmed by how lovely everyone is to me Redcap. Don't feel I deserve such attention really.
Sunshine, you have been on a journey already. Amazing what science can do for us nowadays and such promise for your future after you've beaten the beast!
Caz, have we decided on a name. Will need to rename the thread Poems so kindly started for us ladies. The AAA's have been inspirational. I too like May Moonbeams(shining through xx)
Emma x
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Re: May Moonbeams

Hi everyone, there are a few of us for May already and all in the same boat. So glad we are here for each other.
Just want to say a huge thank you to all of you who have already been through the treatment and giving us your support.
Caz, I laughed at the vajazzled.
Does anyone else cry when anyone is nice to them? xxx
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Re: May Moonbeams

Hi sunshine welcome on board gosh youve been going through a lot on top of all of this but as you say when it is something as positive as egg harvesting you at least feel you are doing something
Sorry to hear your oncologist made you feel rushed hopefully just an off day for her,though thats no excuse !Have you had surgery already ?
Stay positive sunshine lots of love caz xx
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Re: May Moonbeams

Hey ladies,
I would love to join the May thread! I've just been going through egg harvesting which is due to be done Monday!! Fingers crossed there will be a few eggs there to go in the freezer!! It has been a great distraction in the last couple of weeks, feel like I've been doing something constructive for my future!!
Now just waiting for a chemo start date in the next couple of weeks! Pretty scared in truth ladies and my oncologist just made me feel that she wanted me in and out which didn't help!
I would really love to go through this experience with some of the fantastically brave ladies I have seen on here!! I will be having 3x FEC and 3 x Tax then 15 x rads and 18 x Herceptin!
I'm 32 and finding it really hard to be with my friends at the mo, they are getting on with their lives, having kids etc and I just feel my life is on hold!
Would be great to have some support, my family are lovely but we don't really talk that much and not sure how they are going to cope! Just going to do my very best to keep positive and take each day at a time!! 🙂
Big hugs to all of you
Xxx
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Re: May Moonbeams

Hi, I'm from the December chemo thread - we are all just finishing and emerging blinking into the sunlit uplands of Life After Chemo.

We did it, and when times were bad we helped each other through ! So will you ! Best of luck to you all xx

I noticed that several of you are quite anxious about nausea; you may know this already, if you've been reading the various chemo threads, but if you KNOW you liable to suffer badly from nausea, and are having FEC, which tends to cause quite severe nausea in many people,, then it's a good plan to ask for intravenous Fosapprepitant (which is the IV form of EMEND) BEFORE your first chemo.

It's expensive, so normally they use it as a second line anti-emetic - ie you have to prove you really need it by vomiting a lot after your first dose of chemo, and then you get it for your second dose.

I'd already had major vomiting problems with other drugs before chemo, so having read about it on this forum I insisted on having Fosapprepitant up-front before my first dose of FEC, and they were fine about it. That stopped me actually vomiting, but I still had bad nausea, and ended up taking Ondansetron (also expensive) for the entire first week of every cycle (they usually only give you it for 3 days) PLUS Cyclizine PLUS Domperidone - it took all four drugs, plus the steroids, to keep the nausea under control, and each cycle it lasted for nearly 2 weeks.

I was a pretty extreme case with the nausea, and hopefully none of you will be the same, but just in case it may be useful for you to know what it took to get the nausea sorted.
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Re: May Moonbeams

Hi melrose hope you are recovering well from your op and things go ok for your appt
Redcap i knew you would find your way here hope your ok
pauline hope chemo is going ok for you
emylou i love to hear stories like yours im already thinking of a holiday for next year. must confess shed a few tears this morning when got bone scan appt through for 2wks time but have just enjoyed lovely long walk and nice lunch with my sister and my youngest son xx caz
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Re: May Moonbeams

Hi Ladies, I'm from the May 2012 thread and was you are this time last year. I just wanted to wish you all well and hope you all draw on the great support and humour and friendship from each other that I did from my chemo buddies. You will, like us, all get through this tough time and come out the other side and be where I am now - got my hair back, albeit shorter than before, my energy levels are returning and I feel like 'me' again. I've just returned from a fantastic holiday to Thailand with my lovely oh and children. Take things one step at a time and get all the help you can during your chemo journey. Wishing you all the very best, Em Xxxx

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Re: May Moonbeams

Hi everyone , I'm in kings Lynn , Norfolk I'm not trying the cold cap if I lose my hair I lose it but people will know as it is purple at the moment.....
i just want o get on with it and get it over with. I need to look and see what I need to get for a kit any help in that direction would be welcome
marie
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Re: May Moonbeams

Hi Ladies, just popping over from the AAAs to wish you all the best

Deborah - glad things are starting to move forward for you, you've been hanging about for ages!
Pauline x
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Re: May Moonbeams

Hi All, I have my Oncologist appointment on 30 April so hope to start the chemo in May too.
I worry about everything too, but am sure to look on the positive side once it is started.
It sounds like we need ginger nuts and lots of water!!!
I like the sound of May Moonbeams.
Look forward to comparing notes with you all. Lets stay laughing, they say it's the best medicine xxx
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Re: May Moonbeams

Oh I hope it will be sorted soon, can you imagine the dust, and I have to let him and the kids clean up. It's torture. Wood work tops being fitted today so that'll be another Great Leap Forward. most of it should be finished by end of May I think. Oh is a plumber, but he gates his mates in to do work top cutting, tiling, electrics etc so I'm really lucky.
Alex.
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Re: May Moonbeams

Hi girls
I've just had mx and ANC so think I'll be starting chemo mid may. Although it is my son's 18th on the 21st May so not sure what to do.
Go in on 2nd for results etc so will know more then. Have been following the lovely April ladies so hopefully can be prepared with their advice.
Some good alliterations Lexi 😉 I'll have a think of names too. As its spring time we could be the May Butterflies? Or like Merry May . . . .
Xx
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Re: May Moonbeams

Ah Alex that would be good timing ! but you will have a lovely new kitchen when its all over will it be sorted before you start treatment? Mine should be condemned but will have to make do caz
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Re: May Moonbeams

That's weird Cazd our posts went out at the exact same time! Yes it will be 6 cycles of FEC followed by 4 weeks of rads, seems like an enormous mountain to climb, but as we can see by this site we will get through it and come out the other side.
best wishes Alex.
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Re: May Moonbeams

My post above is a day out as it didn't work yesterday, had a nice evening tho! I've been thinking about a name, how about the Merry May Madhatters or May's Merrymakers, Mad May Molls, May's Marvellous Moonbeams. I have time to kill so getting a bit carried away now. Anyway just thought I'd throw some out there. Going to look up thermometers now and kitchen heat savers - having a new kitchen fitted throughout this all too by Oh - house is upside down and in disarray just like my life.
Alex. (I'm in Exeter, Devon by the way)
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Re: May Moonbeams

Hi lexi you will be the first to start good luck with it will be thinking about you on the 30th hope you enjoy the next few days before it all starts .Are you having the 6 cycles too?
We arent offered the cold cap at our hosp and to be honest i get headaches so had decided even if they did to not go for it .Im quite calm at moment too and just trying to relax ,be a normal mum when the kids come home from school ,meet friends for lunch (have never eaten out as much as i have recently def telling on my waistline im going to have a big moon face when the hair goes).All the best caz xx
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Re: May Moonbeams

Hello Caz d and Poemsgalore, I've been reading various strings and thought about joining the Awesome April Angels, but my very first FEC cycle is scheduled for April 30th so I think I would like to join in the May string so here I am. I had to book myself a blood test at my GP for the day before the treatment and I have a patient assessment on Friday 26th which apparently can take up to 45 minutes. They're all different these hospitals aren't they. I've decided to give the cold cap a miss and just deal with hair loss. Feeling fairly calm, but a little worried about the talk of temperatures and infections, but I suppose we have to take note of how our bodies are coping with everything And ask for help as soon as we need it. Going to forget about it for a bit now and go out for a lovely meal with friends.
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Re: May Moonbeams

Hi katebil and amber thanks for saying hi and good luck with the rest of your treatment xx
Deborah i live in Bangor. Im hoping for piccline too .Im coming from the other side now as im a district nurse so am used to working with them but a whole new experience awaits me in having it fitted and living with it for several months.My friend had 1 fitted yesterday and said it was nothing to worry about at all,though im sure ill find something to wory about wouldnt be in my nature not too caz
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Re: May Moonbeams

Hi
Just popping in from the AAA's to wish you all good luck with your treatment. Take all your anti sick meds and drink loads to flush the chemo out of your system. Any problems just post on here and somebody will have an answer, don't suffer in silence
Sending you all big hugs xxx
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Re: May Moonbeams

Hi all
good luck with your treatments, for nausea you could try some seabands, they work for me on travel sickness and I'm wearing them during and after chemo.....no idea if they work but I'm trying everything to keep nausea and sickness at bay!
Kate
x
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Re: May Moonbeams

Hello Caz, I had lymph nodes removed first time and then back twice more to get clear margins so can sympathise. but it wasn't too bad at all, and more or less got full movement back in my arm. Whereabouts are you in NI? I'll have a think about a name, but I'm not very imaginative....it would be nice to go with something summery.
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Re: May Moonbeams

Hi deborah sorry just caught your post .I live in n ireland yes have you any ideas for a name ?
you must be very fed up now i need more surgery to remove rest of lymph nodes and didnt get clear margins in breast but they decided to do chemo first then surgery then rads and i just want to get going xxcaz
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Re: May Moonbeams

hi marie,
I was out with friends from work and theyve bought me a vajazzle kit for when the hair goes lol maybe ill start a whole new trend .Hope things go ok with your appt xx caz
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Re: May Moonbeams

Hello Caz and nanniereeree, I had expected to start in April, but not seeing the oncologist until next Thursday so will likely start the week after. I'm really really keen to get on with it now, as my diagnosis took a few weeks and since then I've had 3 excisions so I've been hanging about for months now!

I'm going to spend the next week making final prep, have ordered a digital thermometer (with thanks to advice of ladies on the live chat last night), and am about to order some hats. Am also going to check out whether I can have a portacath or picc line as there are always problems finding a good vein for me.

Caz I'm also more worried about the sickness than hair loss etc as I get travel sick and also suffered a lot of morning sickness during pregnancy. But I feel better informed now about what to ask for and just generally I feel better prepared for it all through everything I've read on here.

I'll be at Barts - where abouts are you both?

And should we pick ourselves a name?

Deborah
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Re: May Moonbeams

Looks like I will be in the may group I have appt with an oncologist next we'd 24th so think it will be may when I start chemo..caz d I'm with you I am worried by the nausea I don't do sick lol I'm alright in a plane but not good in a boat
Marie