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Nearly 4 years in and brain mets. Please help

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Re: Nearly 4 years in and brain mets. Please help

Hi Moijan

I did not realise your treatment has been changed from the having injections once a month. If you don't mind me asking when did the last treatment fail as you do not seem to have been on it very long.

Hope the new treatment works well for you.

Linda

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Re: Nearly 4 years in and brain mets. Please help

Carolyn, we haven’t yet seen Mariaxx

 

Moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Hi Lissa, really good news there...do rest up though...I know you are one for rushing about ! Lol

 

Am pleased you, too showed yourselfxx I was wondering how you were.

 

i am on taxol three weeks on, one off and have had one dose.....loads of temporary side effects, but am using reiki to try and ease them...so far so good...I am sooo pleased I did reiki one course...have been practicing on myself a lot!

 

Took me aaages to agree to taxol, for reasons I won’t go into.....but now am resigned to it so far.

 

 

by the way, there are some really interesting books by jo dispensary on quantum healing...I have two of them so far and they are very inspiring,  ‘you are your own placebo’.  And ‘how to stop being yourself’

got A cd also for the latter one...all off amazon. Will let you know how I find them. Also, ‘the healing code’

is A good book.

 

 

love to everyone and loads of butterflies and hugs....

🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋🦋😘😘😘😘😘😘😘😘🤗🤗🤗🤗🤗🤗

 

moijanx

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Re: Nearly 4 years in and brain mets. Please help

Hello Ann, great you have been referred to RMH, it means they think they can help you, I’m sure.

if you read back you will find the symptoms you are experiencing are common, and as the brain swelling goes down, you hopefully will find some improvement. though I think Lissa will be able to reassure you better on that. I see she has posted, but haven’t read it yet. Lots of love to you.

 

xxxx

Moijan😘🤗🦋🦋🦋

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Re: Nearly 4 years in and brain mets. Please help

Hi Ann,

 

So happy to hear from you. Please do not apologise for the delayed reply. You needed the time to cope with the vision & pain... even if you didn’t, take all the time you want. I didn’t want to bombard you until you were ready to make contact. Yes, January is almost over, haha!


The UTI turned into a kidney infection & became a much bigger issue. However, it’s been dealt with by the urology team, operated on, infection released & is being blasted by powerful antibiotics. Just over two weeks later, I escaped hospital - been home over a week now - & am trying to build strength & recover. Medics confident cancer hasn’t spread so I’m more than pleased.


Sorry to hear about the pain & double vision. It’ll take time to settle but I know it must be frustrating for now. Very encouraged that you’ve been referred for stereotactic. I had it two years ago & it proved a success. Have been referred again because this brain tumour was in a different location from the last one so they can do it again. Been 2 months since this latest craniotomy. RM consultant wants to see me in next couple of weeks but giving me time after kidney issue. Am keeping fingers crossed you’ll hear from them soon. In the meantime, I hope the vision improves & the pain eases. Take it easy. Thinking of you.


How are all you ladies doing? Praying all’s well as can be.


Sending you all peace, love & boundless HOPE!


💖💖💖 xxxxxxx

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Re: Nearly 4 years in and brain mets. Please help

Hello everyone! Sorry I haven’t replied for a while, I’ve been suffering with double vision & a painful neck/head which hopefully is part of the healing process. I’ve been referred to the Royal Marsden London for stereotactic radiotherapy which will hopefully happen in the next couple of weeks. It will be 4 weeks this week since my craniotomy! Where has January gone!! It’s ridiculous. How is everyone else doing? Lissa how is the UTI? Any improvement? Sorry to hear you’ve been in so much pain with it Smiley Sad
Well hopefully I will check in in a few days, I will try not to leave it so long!
Sending you all big hugs & lots of love xxx
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Re: Nearly 4 years in and brain mets. Please help

Hi Carolyn,

 

lovely to to hear from youxx

 

yes,Maria, do pop in, this is THE place xx

 

Moijanx

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Re: Nearly 4 years in and brain mets. Please help

Bumping this thread up for newly dx Maria. .hope ladies here can offer her some support
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Re: Nearly 4 years in and brain mets. Please help

 

 

Hi there Stars of the thread!IMG_0126.JPG

 

Love and warm hugs to all of you....no word from any of you, so hoping all is well?

 

 

moijan

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Re: Nearly 4 years in and brain mets. Please help

Not bad Lissa thank you. Hope all is good with you.

moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Hi Ann,

 

How are you doing? Any improvement on the headaches? Feeling any stronger? Don’t reply until you’re strong enough to or if you even feel like it. Take it easy. Thinking of you. 

 

How is everybody doing?

 

💖💖💖 xxx

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Re: Nearly 4 years in and brain mets. Please help

Hi Ann,

 

Congrats on getting through the surgery successfully. It’s extremely daunting not know what you’re going to wake up to. Don’t know if you’re home yet but let the neuro team know of ANYTHING that concerns you. Keeping everything crossed nothing does. 😊 Take whatever time you need to recover. 

 

Apologies everybody, I’ve been missing though you’re never out of my thoughts.

 

Came into hospital last week to sort UTI. Horrendous pain that had me hollering & crying. Myriad different antibios didn’t work, pain increasing, can’t walk or talk properly, no energy. Eventually on Monday, urology dept did a CT scan... showed a blockage in my left kidney. They operated directly into the kidney that very night to unblock it. Oh so painful procedure but successful... kidney unblocked! Hooray! Antibios helping a bit more as infection now draining away. But they discover it’s a bigger infection than first thought so now need different way more powerful antibio which they give immediately!!! That & we’re still not sure the cancer hasn’t spread. 😓 Need to see gynae team next, then back to neuro or oncology team, not sure. Oh well... honestly don’t know what to say or do. Two years of no progression is a success story to me & I intend to continue being a success story for as long as possible! That's all I can do.

 

Cancer needs to learn that we lifers are made of stronger stuff. Apologies again but defiance & hope are the only tools I have. 

 

Thinking of you Ann and all of you lovely ladies.

 

Peace, HOPE & Love...

💖💖💖💖💖 xxxxxxxx 

 

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Re: Nearly 4 years in and brain mets. Please help

Kimberley, how are you?

 

Lissa how are you too? And Ann?

 

 

 

hugs,

 

Moijanx 🤗🤗🤗

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Re: Nearly 4 years in and brain mets. Please help

Ann, just realised...you just made this weeks' Star of The Thread' spot xx

 

should have added, if you find you think anything is getting worse as opposed to just lingering on,  do call your surgeon for reassurance xx

 

hugs

 

Moijan. 🦋🦋🦋

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Re: Nearly 4 years in and brain mets. Please help

Hi Ann--very well done!

 

a scary time for you I know but try not to read into any symptoms....the body takes quite a while to heal. I know with brain mets/ treatment it's very hard to switch off..yes rest, rest, rest.

 

Don't expect too much too soon.  But most of all, try not to analyse the symptoms.....just accept they are there and give it time...... your brain has been operated on in a way and nerve endings will need time to recover and settle.

 

lots of love and hugs

 

Moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Hello everyone just a quick update! I’m home, feeling quite fragile, have an intense headache that comes on every 10 mins but lasts about 30secs. Can’t work out if it’s my eyes, head or brain. Was feeling so good on the day after op so am a bit down about this. Surgeon says it could be everything going back into place. All in all think I’m doing ok. Trying to rest as much as I can. Any advice would be greatly appreciated, rest rest & rest! Hope all you ladies are doing well, as well as can be expected. Thinking of you all xxx
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Re: Nearly 4 years in and brain mets. Please help

ANN hope all went well and you feel you are recovering.

 

Lissa, same for you...hope the uti has been thrashed.

 

Kimberley, hope you find what you need, but above all, some peace of mind xx

 

Mo8jan💚💚💚

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Re: Nearly 4 years in and brain mets. Please help

Kimberley,

 

''I'm sorry about your news....how awful for you.

 

..did you ask for a prognosis ?

 

I had a whole body MRI yesterday and was chatting to the radiologist...he tells me there are a couple of new drugs out recently, which have been proving good at reducing brain mets.....the names were letters which didn't make sense but you could ask about them.

 

'I haven't been diagnosed with brain mets...but I have friends who were given prognoses....frankly doctors CANT be sure/certain exactly how much time we have...I have asked mine to NEVER mention a time limit or estimate, as I wouldnt want to be counting down......doesn't appeal to me xx

 

''I realise brain mets diagnosis is a biggie.....and something we all dread.  In your case I would try to remember that doctors don't know about times, they are not gods(sadly) and they usually don't like to state a time, but feel they must, when asked...which has to be a guess ..even an educated guess.

 

..but a lot of people live much longer than expected and honestly, that thought is one to hold on to if you can....

'a lot of ladies on here have been given bad news and years later....here they are xx

 

love to you

 

Moijan

 

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Re: Nearly 4 years in and brain mets. Please help

Lissa, so very sorry re the utixx 

 

the hosp is- will sort it and I'm glad you have help...we're you meaning a pun re 'potty' ?

 

love to youxxx get better soonxx

 

Moijanxx

 

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Re: Nearly 4 years in and brain mets. Please help

Hi Kimberly,

 

Nicky’s right, most of the posts are from November or December... just before Christmas. Hope you find them useful. 

 

How are you ladies doing? 

 

Apologies if i’m not on here for the next few days. This UTI is sending me potty! I’m in too much pain, I can hardly walk and the antibios are clearly not working!!! Have to go into hospital for tests, blood test, etc... hope it gets sorted. Feeling very down. 

 

Hope you’re all well. Thinking of you all. 

 

💖💖💖 xxx

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Re: Nearly 4 years in and brain mets. Please help

Hi Kimberley

Sorry I can’t help you out on any info about brain mets but I’m sure one of the ladies on this thread can. Although you say it’s from last year the last posting before yours was 31st December so it is the most up to date thread there is at the moment regarding brain mets. If you haven’t read it from the beginning it may be worth doing as there’s a lot of very useful and informative info on here from the lovely ladies dealing with these mets. 

Nicky x

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Re: Nearly 4 years in and brain mets. Please help

Can someone let me know if there is a update thread ? Thank.u.
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Re: Nearly 4 years in and brain mets. Please help

Oh wow im just realizing these post are from last yr
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Re: Nearly 4 years in and brain mets. Please help

Carolina 33. How ironic that I see your post. My youngest son 's football number 33. He even as it tattooed in his arm w fb and eagle. He as been playing since the age of 7 yrs old he is now 24 and plays semi pro. Long story short Ive been battling Her2 + breast cancer for yrs Oct 2013. As of Oct 6 2017 they found 11 tumors on my Brain. W/O Radiation to my brain 2mths to live and I would die from a neurological death . With 10 treatments to brain which I had in Oct 4 to 6 mths to live.Whats your update ? R u having the surgery ?
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Re: Nearly 4 years in and brain mets. Please help

Hi Lissa,

 

we need another swear day..don't we!  

 

What a bu**er of a nuisance having a uti....oh.b*m!

 

I know that you know all about uti's....I find I don't drink enough...then the uti happens...am forced to drink loads and loads of water which relieves the symptoms but keeps me peeing anyway!

 

i live in constant dread of uti s as am heartily sick of taking antibiotics!  I hope yours clears up

- you really do not need one xx

 

lots of love to All of you.xx

 

Moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Ann, so sorry to hear the op has been delayed again. I realise it’s more anxiety you can do without. However, I doubt they’ll put you in any danger. My neurosurgeon actually gave me the option to think about it but I chose not to. Feel free to vent away! That’s why we’re here.


I think the neurosurgeon said the op would take a couple of hours (can’t remember exactly) but once they include them waking me up, sorting me out to get me to HDU (or it it ITU... whichever unit it is anyway... I never get it right), etc, it would be a good few hours before I got back to the ward. I was eating almost as soon as I got back to HDU. I was admitted to hospital on the Thursday, the op was the Friday morning, I was discharged the following Tuesday... five days in all. Thank goodness, always a relief to hear you have terrific support. Brilliant. It makes your life that much easier. 😊 How Beautiful.


Marie Louise, hoping for encouraging results from your scan. Thinking of you.


Moijan, seems your coping procedure is proving to be successful.


Wishing everybody the best New Year’s possibly. Sending you all, peace, love, laughter & an abundance of HOPE.


Roll on 2018! 💖💖💖 xxxxxxx

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Re: Nearly 4 years in and brain mets. Please help

Hello Ladies,

 

Apologies for slow reply, having a difficult time with a UTI, grrrrrrr........! Hopefully, I can get some relief soon.

 

Will try to catch up with latest posts on threat and reply by later today. 

 

Apologies again. 

 

Thinking of you. Much love 💖💖💖 xxx

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Re: Nearly 4 years in and brain mets. Please help

Ann,

 

i understand your anxiety, but honestly...tumours don't normally grow that quickly....was thinking, one thing you might try is to visualise it getting gradually smaller...a bit like a balloon which is having the air slowly deflated out of it....I know lots is said bout visualisation...but I happen to believe it helps.....I'd like to do it more often....however, you said the surgeon was confident about removing most of 1 tumour....I think the balloon imagery might be very useful to you...my tumours are very copious and very small, bar 1, so I'd have to imagine sand being washed awayxx

 

 

I know the wait is hard...but try to use it to your advantagexx

 

Moijanxx

 

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Re: Nearly 4 years in and brain mets. Please help

Unfortunately again there were no high dependency beds and I was sent home. Back to the waiting game again. I am just really concerned that the longer I wait the bigger the tumour is getting. I’ve been told it could be another whole week. Thank you for letting me vent,, hopefully it will be sooner rather than later xxx

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Re: Nearly 4 years in and brain mets. Please help

Ann, It is a great privilege for us, that you are finding the thread helpful and sharing with us.......please read posts if you feel up to it, if we don't hear back for a while, we will have you in our minds.

 

praying for an excellent result to the op. I am certain they would not be operating if they had any doubts about its usefulness to you; or concerns about the outcome......the surgeons are really clever guys +++

 

Moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Good morning ladies.
Thank you again for replying, it really helps to read your experiences & prepare me for how I might feel after treatment. Thank you Lissa I will take it easy on myself & take it slowly. I was called to the hospital yesterday morning at 7.30am, an hour drive away but by 12.30 I was sent home as no high dependency beds available. So we are doing the same again today as they hope there will be a bed. Lissa can I ask how long your surgery was & how long you were in hospital for? Keep resting up & although I haven’t got any helpful advice I will be thinking of you & hoping you are recovering well. To your other question yes I have lots of amazing support. My husband is just being absolutely amazing, he cannot do enough for me. I have my amazing parents & 4 sisters all incredibly close to me & live within 5 minutes. We are a very close family & they are around every day cheering me up & spurring me on & So I am very lucky. I don’t know what I would do without them. I have 2 boys 13 & 9 but at the moment I am not telling them the extent of the situation. They know I’m going for an op & will be in hospital for a few days but I’ve been in & out so many times they are unfortunately used to it. My last op was for double diep flap reconstruction so I was in hospital for 4 days & a 9hr op.

Maria Louise, all the very very best of luck for your scan today. I will be thinking of you. Such good advice from Moijan, sometimes it’s hard to keep a hold of the good advice when panic sets in. I think I will jot down all these bits on paper & chant them to myself when I need a kick up the bum 😂

Anyway, hopefully now you won’t hear from me for a few days as I will be having my op & recovering. Let’s hope 2018 brings us all health hope & happiness.

Lots of love xxx
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Re: Nearly 4 years in and brain mets. Please help

Maria Louise,

 

i pray that the scan goes well for you......and that you get really good results.🤗🤗💚💚💚

 

 

 

if my thoughts were of help, I'm so very glad....we are all in this together...and I have had some wonderful support from ladies on here......., sometimes something a person posts in a certain way will resonate with me

too.

 

lots of love to you and a big hug xx

Moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Mojan,

 

Your advice is something I am going to re read over and over again,  so wise.  I have a scan tomorrow so the timing of reading this is perfect.  Thank you so much for sharing.  much love xx

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Re: Nearly 4 years in and brain mets. Please help

Hi Lissa and Ann.

 

Ann, am glad you managed to get in touch with the hospital.......hope that was helpful..

 

 

i know know what I suggested is helpful to me...when I can do it. Especially re results.

 

with an op in sight, I'm sure you will have mixed feelings....glad it's happening soon and hopefully will be all you wish it to be...

 

however, I know from my own experiences...had a partial hepatectomy, a mastectomy, gall bladder out etc, etc, Operations are a little more difficult to stand back from. With the first two...I was convinced I would die....esp the liver one......I saw a hypnotist who kindly recorded the session, and I played that over and over on a Walkman...even on the way to theatre.....you must prepare yourself in your own way.......

 

also Lissa has had experiences similar to those you face.....maybe Lovely Lissa might share how she prepared herself. ?  You will see from her posts that she has been recovering slowly...so afterwards, if you have symptoms which worry you......try and remember what Lissa has experienced xxx and also keep chatting to us if you can....or reading the thread, if you can't.xx

 

Moijan💖💖💖

 

 

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Re: Nearly 4 years in and brain mets. Please help

Hello Ann.


Relieved you’re feeling better. Up and down days will come but again, that’s normal as you already know. I was discharged from hospital after four days. Took me a while to settle back at home. Learning to be patient. Realising I’m still need more rest than I’m giving myself.. the . 


Do you have adequate support? Hope that’s not a silly question.

 

Moijan, I like your ‘step back’ process. Makes sense. 


Best of luck getting things sorted, Ann. Thinking of you. 


💖💖 xx

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Re: Nearly 4 years in and brain mets. Please help

Hi Lissa& Moijan.

Thank you so much for taking the time to reply to me. I am feeling a lot better today, more positive & have rang the hospital to chase up my op. You are very right in what you say Moijan about trying not to over think as the outcome will still be the same.
How long were you in hospital for after your op Lissa? I hope you’re doing as well as can be expected. I am nervous but want it done. So strange to have these feelings.
Thank you again for both replying. I hope to let you know more when I find out more too.

Big hugs xxx
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Re: Nearly 4 years in and brain mets. Please help

Yes, Ann...you are right.

 

Lissa is our gold medalist on this thread...have a scroll through and see notes about her journey xx

 

 Meanwhile......try to step back a bit...see if you can.......after all, there isn't a lot you can do 

'just at present.  I woke up in the middle of a broken nights sleep realising that I too am a bit concerned as to the outcome of my next MRI, scheduled for next week.....,what I try hard to do, is to reason this way....

 

1/ the outcome is going to be the outcome.......I can worry 24/24 and it won't improve anything.....

2/ from now till the feedback on result....about 2 weeks.....this period is a gift..'..a time with no bad news'

a time to be treasured - in case things  change.....so I don't want to tarnish it with crystal balling or worrying.....

 

''not easy, .....but if you can't put it aside...then make regular appointments for yourself to worry, e.g., 4pm for half an hour...see if that works......keep in touch with us....as we will be thinking of you and wondering how you arexx

 

lots of love and best wishes

 

Moijanxx 💚💚💚

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Re: Nearly 4 years in and brain mets. Please help

Hello Ann.


Thank you so much for joining us. I know this is the last place you want to be but we’re here and I hope you’ll feel supported.


A dx always brings back the anxiety - difficult to avoid it. Just had a craniotomy beginning of December and I’m struggling. Perfectly natural, you’re human and you’re also inspirational... go easy on yourself. Am encouraged by your neurosurgeon’s comments. Doubt it will take them long to have a treatment plan in the works. 


Please keep us posted... if and whenever you wish.

 

Sending you peace and an abundance of HOPE!


Merry Christmas to you too!


Lissa 💖💖xxx

 

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Re: Nearly 4 years in and brain mets. Please help

Hello ladies, I have just been dx with brain mets & nodules on my lungs. I met with a neurosurgeon last week who says he can remove 90% of the brain met. Im just waiting for an appointment at the moment & it’s bringing it all back from my original dx in 2015, waiting is the worst. Hearing all your positive stories is truly inspiring & although I am really struggling to be positive I think once I have a treatment plan in action I will feel like I’m fighting rather than how I’m feeling at the moment. Merry Christmas to you all!
Ann x
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Re: Nearly 4 years in and brain mets. Please help

Hi Buzzing...thank you. Hope you are holding up ok?  I read your post about your mets...you are in good company....xx

 

Moijanxx

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Re: Nearly 4 years in and brain mets. Please help

Merry Christmas xx
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Re: Nearly 4 years in and brain mets. Please help

Merry Christmas ladies. 💖💖xxx

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Re: Nearly 4 years in and brain mets. Please help

Merry Christmas everyonexx

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Re: Nearly 4 years in and brain mets. Please help

Love and hugs to you Lissa,,

 

you are  not alone xx

 

Moijanx

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Re: Nearly 4 years in and brain mets. Please help

Hi Moijan,

 

Result, thank goodness! 😃 You must be relieved it’s all arrive. 

 

I’m taking it very easy so getting stronger. Thank you. 

 

Love & hugs. 

 

💖🎄💖🎄💖 xxx

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Re: Nearly 4 years in and brain mets. Please help

Hi Lissa, think all the Amazon bits are here now...xx

 

hope you are feeling better? You sound as if you are. At any rate we are all rooting for you....lots of love,

 

Moijan💖💖💖💖💖

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Re: Nearly 4 years in and brain mets. Please help

Hi Moijan. 

 

Please don’t worry or apologies for not coming on here. Don’t worry about one thing a day... you’ve a lot to deal with. Go easy on yourself please. The way you keep this thread is truly astounding.

 

It’s not the only case I’ve heard. Who needs this at this time of year. Amazon have to made a blunder. Christmas season is to fill you with joy. I hate to judge, because maybe they’re doing their ‘best’ (maybe not)... my friend was told it was because of the snow... still waiting!!! A similar thing happened to me just the other day with a simple toiletries online order from a reputable drug/cosmetic store. Had to go into the actual shop three get it sorted. My issue is no where near as important as your Christmas goodies making the rounds goodness-knows-where without any resolution. How upsetting & frustration! Doesn’t help that the situations we’re in makes everything harder to cope with. Guess they’re not aware just super wonderful we all are! 😍 I’m so sorry. Wish I knew of a way to fix this & make you feel better. 

 

Please know I’m thinking of you always & seriously hope they fix it soon. 

 

Wishing you & all of you Beautiful Ladies have the best Christmas possible. Sending you all, hugs, peace, love, laughter & the gift of HOPE!

 

Lissa 💖💖 xxxxxx

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Re: Nearly 4 years in and brain mets. Please help

Hi Lissa,

 

''wonderful to hear your news...keep putting one foot in front of the other, as you are...steady goes it xx

 

sorry I haven't been on the website for a while...I am not really enjoying this Xmas season as much as I used to!  Amazon and cards flying about all over the place and I too only get one thing done each day.

 

wishing you well for Xmas Lissa...also everyone's else who pops into this thread.

 

love and hugsxx

 

love to you Bon, also. Xc

 

Moijan💚💚💚

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Re: Nearly 4 years in and brain mets. Please help

Hello bonariensis

 

I will rest, promise.

 

Fantastic, a jazz concert. I haven’t seen David Newton perform live but I’ve definitely heard of him. Excellent Just looked him up on YouTube & found his redemption of ‘Tea For Two’. Excellent pianist. What a treat. Glad to hear you enjoyed it. Thanks for telling me about him. 😃

 

Off to bed now. 

 

Goodnight ladies. Wishing you all a sleep filled night. 

 

Much love 💖💖 xxx

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Re: Nearly 4 years in and brain mets. Please help

Hallo Lissa

Good to hear from you and to hear and see that reading and writing are improving. Rest so you can enjoy Christmas. We put our tree up early this year as there were young people who wanted to help. Went to a jazz concert last night. Guest pianist was David Newton who was great.

 

Take care and enjoy Christmas.

Bon xx