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Bone mets - please join in

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Re: Bone mets - please join in

Hi Jeannette, snap! My last scan took ages too,later found out they were teaching!

 

i had all sorts of thoughts in my head till I found out!

 

best wishes

 

moijanxx

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Hi Helen...When I had the cold cap with Eribulin, it had to be on from  half an hour beforehand, during chemo and until  an hour after the infusion finished.......my hospital werent happy to give the cc as they said research showed it didnt work...but as I was so stressed, they did let me have it.

 

when you go, remember to take your headband to protect the skin round the edge and your baby conditioner spray  for them to damp down the hair before putting on the cap.....very good luck with it.

 

Moijanxx

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Good luck Helen..i will try on Friday.but lack of help by that nurse is bad...surely they can contact somewhere .im under Southend university hospital.they are very knowledgeable.but I get feeling some of them think were taking up valuable time when we use the cold cap.fight for it.xxsharonxx..x
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All the best for today x xxx
Carolyn xx
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Sharon - I'm gonna push for cold cap today. Is there any chance you can take pick of chart when next in so I can show them next time? Don't worry if not though. The nurse I spoke to was looking online and saying she'd never given cc with Eribulin so she didn't know timing etc. She was the moody nurse, rest are great so hoping I get a nice one when I go in an hour xx

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Hi Corey Glad you've managed to avoid some of your trips to Exeter but shouldn't someone have sorted that out for you? I went to Plymouth with my grandchildren for school shoes on Friday. They seem to train up a lot of students as shoe fitters to cope with the rush. Hope you're OK x

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Omg ...40 minutes in a scanner sounds horrible ..hope u took some good music with you...
Carolyn xxx
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Hi all, well flipping eck that was noisy! Thought it would only be a 5 minute job but it took around 40! Oh well at least it's all over with now just need results. 

Hope everyone is okay, hugs Janette xxxx 

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Helen Aquarius..they have charts In Chemo ward which tells them times..i dont understand why they're not trying to help you..xxsharon
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Ss tried to pm you but system wont let me.xxsharonx
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Hi Helen I did pm you.xsharonx
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Hi Sharon.. I've PMd you - if you are back on line today or before 11.30 am tomorrow can you take a look :-)) thanks Helen xx

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Sharon, glad to hear you are improving,,i'm sure it will continue.

Corey..glad to hear you good news on 'both fronts'.

Jeanette, good luck with Mir...as you say that's the easy bit, but we,'ll all be 'holding your hand'.

Love to all.x

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Good luck Janette! 

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Yes Barton ..missing him today ..hence keeping busy but lucky to have him school holidays ..he's grown into a lovely twelve year old young man.
Just changed all bedding and shampooed bedroom carpets ..yay !!
Bar of choc with my name on it waiting.
Carolyn xxx
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Carolyn, commiserating with you for "loss" of grandson, but hope you enjoy your nice lunch! Not much compensation, I know, but the time until half term will go quite quickly.

 

Hugs. Barton.x

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Hello Corey, thats really good news! So much easier than travelling all that way otherwise! I do hope the se's are mild or non-existant.

 

Hugs. Barton.x

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Hiya Corey
Nice to hear from you ..Glad things moved !! That's good about the picc line being done locally rather than Exeter.
Yes ..we had my grandson for six weeks summer hols ..he went back yesterday so he has a few days to climatize for school again.
Bought his uniform/ shoes and the twins stuff ..found it hard to get as sold out in aldi, Sainsburys and Tesco. Ended up in matalan which was good.
House feels empty now so we have been washing, cleaning etc etc. Going out tomorrow for the day and maybe a nice pub lunch.
Hope u feel ok now after getting the chemo under your belt.
Carolyn xxx
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Hi every one well the senokot worked but I think I shall not take one tonight as things are starting to go too well if you get me . After many phone calls I managed to get hold of the district nurse and I'm getting my picc line flushed 4 miles away in holsworthy . Very happy as thus means I don't have to endure the 1hr plus trip to Exeter and I can be home in 1/2 hr . Lovely weather . I have to get organised and get kids school shoes and running out of time. they go back on the 5 th sept where does the time go .
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Janette, good luck with MRI today, will be holding your hand. Have you had an MRI before? They are noisy! Hope the results come through quickly so you don't have too many anxious days. xx

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Jeanette
All the best for the scan ..not had a mri before so I don't know what its like.
I don't get tumour markers or had a bone biopsy either so lagging behind you!!
Hugs xxxx
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Morning ladies, hope everyone has enjoying the lovely weather.
Sharon, how you feeling? Hope your taking things easy and on the winning side of things.
Well off for my MRI this morning, having the scan doesn't really bother me it's the result that gives you the willy's isn't it!!! Well at least I will have them before I go away next week.
Hugs Janette xxx
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Sharon a long warm soak sounds good! I always shower! Think I'm going to have a bubble bath!

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Hi Helen.yes second shot Friday
Not long between it is there
.you may not get same side effects..hope you get to the show iv seen that it was brilliant


Little bit better today had a bath ate lightly
Very tired..yes I did use the cold cap
.hope you had lovely holiday.love sharonx
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Hi Sharon

glad you are starting to feel better a nice warm bath in your own home and home comforts always help. Take it easy Cyber ((((hugs))))  xxx

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Hi Sharon.. Crikey what a week you've had! Sorry not in touch, was in Spain but back now and see you have beaten me to the Eribulin. Not looking fwd to it! So did you cold cap? I'll defo get the full sickness med stuff. I'm having it wed and then driving to London to take my little girl to see the Lion King on Friday.. Now worried I won't be well enough. Would be gutted as been planning this for ages.

 

So you must be back again for the second round next week and then a week off. Do keep me posted (pm if prefer) on how it goes and we'll swap SE's

 

really hoping this was an initial blip for you and all is getting back to normal. 

 

Helen xxx

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Hi Sharon, glad you are feeling better. Yes, try Carolyns remedy..(.ps she hasnt got any herself? Ipinched her secret supply)

 

Huggy  thoughts,

 

Moijanxx

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Hi Sharon, glad you are feeling better.

 

huggy thoughts,

 

Moijan💚💜💙

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Sharon
Glad u feeling better and a nice soak in the bath will make you feel better too.
Nothing like being at home with all your own things around you.
Hugs xx
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Pleased to hear you are feeling a bit better today and are managing to eat a little. Glad you enjoyed your long soak, keep resting. Fingers crossed you´ve turned the corner and the rest of the week will be much better xx

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Hi to stress head.Carolyn moijsn and funny face
And julied and everyone else

I feel bit better today eating lightly no sickness.
Just resting had lovely long bath .hope everyone doing well..xx
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Hi Ladies and a very late welcome to vic.toria and Dotty.

Sharon, glad to hear your drain went well bt sad to hear you are suffering after chemo...you are having to endure a lot of things at once...i really hope you feel better soon,

Corey, i was given Laxido for constipation...a sachet of granules which goes into water to make an orange drink...a few days on those sorted me out and i believe you can take them regularly if necessary.

Hope all are as well as can be expected and enjoying a bit of late summer sunshine.

Love and hugs to everyone. xx

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Morning Sharon
How are you? Are you feeling a bit better? Try to get some sunshine and get yourself a nice McDonalds and a large bar of choc . Always helps.
Hugs xxxc😐💟💟
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Good morning ladies
Well Sun is shining ( unusual for bank holiday!) And so we must enjoy this last bit of summer as Autumn is creeping up evenings now ..ugh darker .
Hope everyone is coping with their aches and pains .
Xxx
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Sharon, I arrived home to see you are home. I see Carolyn and Moijan are checking in on you. Take it easy, curl up in your favorite comfy spot. Have your family get you a few of your favorite comfort foods and some things to pass your time. Make it your special little nest! The change in meds could very well help upset your stomach. Plus all of the anxiety from changes. Pamper you and call for help if you need it! Hugs! FF

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Yes, I hope you did too, Sharon, you deserve a good nights rest at home! 

 

Regarding 'that number'  i rang it myself today...only because ive again got a urine infection...popped down , gave them a sample of my 'very valuable, prize-winning wee' and they gave me a prescription...so it works to call.,.......xx

 

Glad you went for the cold cap...I only wash my hair every three weeks, and when I do, i just pat on the simple shampoo and rinse and then the simple conditioner. I dont dry it either...good luck with the cc.

 

Huggy thoughts

 

Moijanxx

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Hello Sharon
Hope u had a good nights sleep in your own bed and the chemo is settled a bit. It's a bit of fear of the unknown when you start a new one but lucky you have Moijan to give you good advice and a lot of hugs and thoughts from the rest of us.
Xxx Carolyn ☺☺
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Well done Sharon, hopefully you will sleep well, but dont forget to call that number if you are worried!

 

xx

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Moijan I dont know...iv gone to bed taken sleeping tablet and painkiller...actually yr right the last crude act on x factor probably has made me feel sick.x
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Hi Sharon, sorry you feel sick, do you think its the Eribulin? Are you taking the antisickness pills they gave you? i did take them regularly  for the first two cycles, until I discovered i didn't  need them. Do you think. One of the new meds could be making you feel a little dizzy?

 

Did they give you a number to call if you were concerned? I would make use of that if you are worried. i always do!

 

hopefully, it was the Xfactor that made you feel sick!( Im going to get shot now!)

 

Hope things settle down for you, love and huggy thoughts.

 

Moijanxx

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Well I'm sat here like porky pig as its my son's birthday so we have all been out for a family meal and of course I had to have the gateau to finish ...where's the Rennie tablets
will b popping a few of them tonight !!
I actually feel like a little Buddha in my armchair ......broke all the rules of not eating or drinking after 6pm.
Xxxx
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Sharon
Although its nice to b at home and your own bed and comforts ..maybe they should have kept u in an extra day or two to monitor you with the new chemo etc.
What a week for you but you have a lovely family around you and maybe a little hug from your grandchild will cheer you up over the weekend ..they are a great focus away from everything .
Sending you huge hugs xxxxx
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oh Scratch I'm so sorryyou are feeling so rough, glad you are at home in your own space and comfort but rotten you are feeling so horrid. It's probably a combination of the lack of sleep, the chemo and the change in meds. I  do hope your body adjusts and you start to feel much better ver the next couple of days. Do keep a record of how you feel and report it to your team there may be things they can do. I  hope you have a restful night and send a gentle hug xx

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Hi all got out of hospital at 6tonite.watched x factor feel really sick..they also changed my medicine painkillers to oxycontin anyone had bad experience on that
I dont know how I feel
Its been horrible week.hosp drain then the chemo and changing all my meds

Hope I feel better as iv got the next one on Friday
X
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Very well done Sharon, sure you will do wellxxx

moijan💙💗💜💚😎

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Moijan I did have anti emetic as it was the first one.and Il see how I go.i am on 75%...dose....i did use cold cap yo try to save hair..it worked on my Las chemo of docetaxol.if it falls out iv got wig etc ready ..the actual chemo was quick.
Love Sharon.x
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Carolyn enjoy your cake.im not a lover of cakes but do like choc and cheese..xx
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hi there Sharon, did you have the cold cap and the antiemetic?

 

i feel much better without the antiemetic, personally.

 

i was also given domperidone and told to take it three times a day for three days, I dont do that either now, but keep them in my handbag.,

 

you may not get any side effects..I got slight sore mouth after about a week, but started rinsing with weak soda bic one teasp to a cup of water, after each meal and use a soft tooth brush. You need to just see how you go, you might need the antiemetic, but wait and see. My onc said sickness is  a rare s/e.

 

my white cells fell, quite quickly, the onc reg told me this can happen, so I was very careful esp after a few days,,,to avoid coughs colds etc...in fact i missed a great party over that! However, I now have filgrastim, inj myself and my cells come up really well, get no sore mouth - less tired.

 

thats one thing which happened quite quickly for me, be prepared for sudden overwhelming tiredness about 1 or 2 days afterwards....pace yourself and see how It goes.xx

 

maybe you wont get any s/e, they said that to me and I said 'yeah, yeah ' sceptically, but honestly Im feeling really great now!   I also read that people do much better when they are told, well you may not get se, and less well when told the opposite!

 

But truthfully, i only know im on chemo, because of being a pin cushion and a 'hairless hattie'

im sure you will do well, if not, they may give you some filgrastin or lower the dose. Im on a 60% dose ( due to my raised liver blood results) and its working really well!

 

huggy thoughts, Moijan💜💙💚😍 waiting to hear how you are doingxx

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Funny face
Have a nice day at beach ...hope u have yr bucket and spade packed for sandcastles !!
Xxx
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Everybody take care of you, I'm off to the beach! Hope those of you not feeling well are on the mend! FF