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Bone mets - please join in

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Re: Bone mets - please join in

As you say Benten, many complete all their treatment as prescribed and it still returns. Think stem cell involvement is more likely a reason cancer returns so you’re right not to beat yourself up about things. I had been going to my GP for years insisting something was wrong, I wasn’t ignored but mammogram and ultrasound were clear and they were unable to get anything when I had my first biopsy years ago. When I was diagnosed straight to stage 4 I initially ‘blamed’ myself for not insisting more was done earlier, but my primary still hasn’t been found, so sometimes things are not as straightforward as we think. Hope everyone is keeping snug! Kxx

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Hi Riversidedawn.

Nobody in my family has come right out and said it but it has been heavily hinted that if I had completed my course of chemotheraphy this might not have happened,  My medical team stopped my chemo after four sessions because of my reaction to it,  I was borderline for chemo. I faithfully took my litle tamoxifen pill every day and it still came back after three years. I think they feel I shoud have fought to carry on with chemo. I refuse to beat myself up about it. I did what was best for me at the time. Lots of people complete chemo and take their little pill for years and it still returns,  Try it again. Like Kate says things change.xx

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Hi Riversidedawn, that’s interesting, I’ve never heard of removing the vertebra when it’s a secondary, so please let us know what your Oncologist says. If suggested I would seriously think about trying again, things can change a lot in three years. Please let us know how you get on, best wishes, Kxx

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Hi ladies thank you for your warm welcome. My surgeon suggested it might be a few blasts of rads or surgical removal of the vertebrae - neither is very appealing!

Dr Google mentions complications with both - what's your experiences?

I'm currently not on hormones as tamoxifen made me suicidal and anastrozole gave me drenching sweats 24/7, I looked like I'd been permanently caught in the rain and it was just no fun.

Hubby now blames me for the recurrence because I refused the hormones. If offered I may give it another go. Have no idea where I am menopausally, I'm 50 and was diagnosed 3 years ago. It seems like the drugs plonked me straight into menopause and flushes have calmed down so wonder if I'm out the other side?

I do agree I noticed different side effects with different brands when I did take tamoxifen.

We shall find out more tomorrow. In the meantime looks like we have a snowy Sunday to enjoy!
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Hi I had my first bone infusion yesterday - zometa - wasn't feeling too great due to a cold but went ahead with infusion and second cycle of capecitabine as blood counts etc were all good. Quite poorly with flu-like symptoms and high temp during the night so ended up at hospital all day on iv anti biotics just in case - all ok now though.

My question is do you feel pain in the bones where the Mets are following infusion? I got out of bed like I was 100 yrs old this morning and I was warned my bones might feel a bit creaky but it seems to me to be where my Mets have been identified. Am I just imaging this??

Wrapping presents is on hold tonight - cuppa and a Christmas movie instead I think x
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Oh funny face ..I do hope it helps but at least it's winter so u can cover it up ..if if was summer it wouldn't look too good with your thong leopard skin bikini !! Ha ha ....
So 13 more sleeps before the cement mixer is switched on for the back repair op if all goes according to plan.
Take care my friend xxx
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Carolyn, We were at a party last night and I called it my new chasity belt, that I didn't know how to put on. Then the men decided it was my push up bra.

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Bon, They get you to try the back brace on at the appointment. It's your choice. I couldn't tell in 5 mins if it helped or not. Insurance covered it, so I took it. After one day I consider it a nuisance. I thought it would help keep it more stable in the car. Instead if we hit a bump my back hits the hard part of it and hurts more. I was in a store walking a bit and thought it helped some. I think I will try it at work. 

 

I did find out that there is contrast in the balloons they insert so they can see their placement better. It is the iodine contrast I'm allergic too. There is supposedly no problem as long as they don't burst the balloon. He says he will make sure he has epinephrine in the operating room in case.I'm going to call him and ask if he can pre-medicate me with prednisone in case. FF

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I don’t think I’ve read or heard about anyone who seems to be okay on the Cipla brand! I had previously had Accord and been fine so that was the obvious one to go back to. There are others that also have less side effects, some are also much more expensive and therefore there is a reluctance to prescribe those brands. Think the best way is to find a brand that suits you and then stick with it, and if that is one of the more expensive ones ask your GP or Oncologist if they will prescribe you that. I was advised by a pharmacist that ideally you should continue with the same brand every month anyway, once you find the best one for you, and get your pharmacy to make a note of the one you want on your prescription record, if it hasn’t already been requested by your GP or Oncologist. Kxx

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Hi.

I also now get Accord all the time.  Cipla and I did not get on at all.  The problem I have is they never seem to have enough of it in stock to give me the full prescription.  Glad this came up because I had forgotten I had to go and pick up the rest of them.  Anybody else have this problem? 

Benten. xx

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Hello Kate
Just to mention to ladies that dont read the hormone therapy threads ....Cipla brand of letrozole seems to cause more side effects than any other. .I just hope ladies don't give up letrozole without switching to an alternative brand first ...I felt horrendous on it and now insist on Accord every month. There are other better brands too but I haven't tried them to offer any good advice .
Xxx
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Hi Riversidedawn, sorry to hear you have mets but wanted to say I have 3 vertebrae involved T12 plus 2 cervical. I was diagnosed straight to stage 4 just over two years ago and started on Letrozole and the monthly Denosumab injection. My Oncologist offered me radiotherapy if I wanted it for any pain but it wasn’t troubling me too much so I refused, and glad I did as once I started my treatment the discomfort improved. My repeat scan 3 months later showed treatment was working and, fingers crossed, my scans have remained stable since. I’ve been lucky as not had too many side effects, other than when I was given the Cipla brand of Letrozole for a couple of months, but my pharmacist now only gives me the Accord brand and everything settled down. Something to bear in mind if you go onto Letrozole as the brand does seem to make such a difference! Hope you feel better once you get your treatment plan on Monday, Kxx

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Hi Riversidedawn. So sorry that you had to join us on this forum but it really is the best place to be after your diagnosis. I had my diagnosis in July after a 10 week wait of scans and biopsy.  I have a met in my pelvis. Those 10 weeks were horrendous. Not sure how I kept functioning.  It was almost a relief to hear the words, 'you have a 2cm bone met in your pelvis'.  I started reading the forum in May and found the ladies on here so reassuring and at times so funny it really helped me through a very dark, lonely time. Five months on I am on letrozle, denosumab injection monthly and about to strart palbociclib in the New Year. Life at the moment is carrying on as normal with just with a few more aches with the change from tamoxifen to letrozole and appointments. I was due to change anyway. I am perfectly aware that it could change any time but no longer feel that the end is nigh. Focus on Christmas as much as ppossible. I can go hours sometimes and forget about it. I had very a stormy meeting at work yesterday.  Believe you me cancer did not enter my mind at all last night, Was planning a murder as I gluggged a large glass of wine.xx

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Hi Ff

Hope you WILL pass inspection for surgery. Will pray too. Does the back brace make you back feel any better or is it just a nuisance?

Hugs Bon xx

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Hello riverside dawn
I think we previously "met" back in the summer when u were having a boob tidy up op in hospital ( excuse my lingo but can't spell the medical things).
Well welcome to bone mets ..sorry u have more problems to face ..it's the disease that keeps giving. .
Hopefully now all your scans are done ( exhausting) you will be able to focus on a treatment plan ..maybe a blast of rads and a hormone treatment will be the first line treatment plan ? But I don't know really ..as.much help as a chocolate teapot ..
Sending hugs xx
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Hi ladies, This looks like a fun and supportive thread and I find myself in the unfortunate position of joining you!

I have had a month of scans, ct, nm bone and MRI as the NHS have cancelled 4 oncology appoints since September so onc wanted a full check up before I finally get to see him on Monday.

Yesterday I saw my onco breast surgeon for annual mammogram which was clear. But she finally put me out of my waiting and speculating misery and confirmed mets in one vertebrae T12. MRI showed no further spread so waiting for oncologist's plan for treatment.

It's a never ending waiting game but I'll keep myself busy this weekend wrapping presents!
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Funny Face
Sounds good and hopefully you will get the proper back surgery ..fingers crossed .
My neighbour had one of those back braces for several months and his back healed very well but they are quite uncomfy ....but it act as a girdle and u will look a lot slimmer !!
Hugs xx
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Well, I have a new fancy back brace and a surgery appt. of Dec. 21st. I have to spend one night bc of my lungs. I still need an EKG and a pulmonologist appt. If I don't pass inspection then I can't have the surgery and must wear the brace for 3 months and let my back heal on its own. Praying for the surgery.

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Good news about your OH and getting a new job, just the thing for this time of the year but what a b*gger about your thumb. I know how much it is affecting what you do and to have to keep going back for appointments and still getting no answers is a pain in the butt.  However it is also good to hear that your gums might be the issue and not your teeth and getting back on denosumab.  You have been given the runaround havent you? Grit your teeth and breaaaaaaaaathe 😉

Nicky xx

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Funny Face

Sending loads of hugs today for your appointment with the surgeon ..hope he can fit you in quickly and help your pain soon.

🌹🌹🌹🌹🌹🌹🌹
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Yes back on Denosumab finally - dentist thinks my pain is due to gum problems rather than teeth - so been given sensitive toothpaste to try, but unlikely to need any work done so OK to start the treatment again. 

 

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Hi dragoncarine, sorry to hear you’re getting the runaround re your thumb, it is annoying when you’re going for appointments and not getting any answers! Assume from what you’ve said you’re continuing with denosumab, did your Onc say anything about your teeth? At least you’ve had some good news! Kxx

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update on my thumb problems, MRI scan showed some sort of lesion on my thumb so orthopaedic surgeon referring me back to oncology - I'll be so annoyed if it turns out it is cancer related after all, and 4 oncology appointments have passed with them telling me to get orthopaedics to look at it grrrrr. It's now been 3 months that I've not been able to bend my thumb or use my hand properly. Feeling quite fed up again. Yesterday saw a different oncologist than my usual one, and there was some sort of mix up with my denosumab prescription (oncologist seemed to think that a prescription was not required and pharmacy would simply hand me the stuff...) and despite discussing needing different pain killers, no prescription for that either. Luckily my OH got a new job today so we have some good news to concentrate on at least.

 

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Hiya ff
Yep can understand u doing sleeps to surgeon appointment when u r in such pain but the timing at Xmas time is very selfish of your back! !!
I just can't watch hubby doing chores as I get so niggly at him doing things so badly! !
Can't photo tree as hubby still beside it ..remotes firmly in his hand too ...nothing special though. .
I also bought the wrong candy canes this year ..they are in packs so don't hang on tree ..
Well tomorrow is D day ..one more sleep .xxx
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Can't sleep back is spazing. Trying to get my mind off of it, so making a list of a few things I need yet. I'm off work today so hubby and I are getting it done. Then wrapping time. I am a lucky girl bc hubby is an excellent wrapper.

 

Then it's clean up time. I will be sitting on the couch directing this. Hubby and son are going to be puppets. I get to dust. Drives me nuts that I can't vacuum. Next Thursday was supposed to be cookie making but might have to change that. We shall see what surgeon says tomorrow for my game plan. I've been counting how many "sleeps" til the surgeon. He is looking better than Santa! The surgeon and the delivery man of all my packages are my heroes. Carolyn, Mine come in a brown truck.

 

Can't wait to see pictures of your dazzling tree Carolyn!

 

Yesterday, Hubby and I had a fantastic day. We took our trains to my work and set up a small display on top of tables for them. My dementia "peeps" really enjoyed them. One man is early stage and used to be a train engineer. He was so excited. He started to planning for my husband to come back and how he would make sure there was more tables for "their" next display!  A couple other men really enjoyed talking with my hubby. Peeps that aren't in the dementia unit came too. One of my dementia clients was trying on Tuesday to get someone to get her candy canes for the tree and some to pass out. All the employees had told her no. She ended up crying. She told me how her family had a floral shop and she always gave them out.  Lol this lady is so mean to me everyday! She can't help it. It's from the dementia. I felt so bad her heart was broken. Hubby went to the store for me and got candy canes. She had a blast giving out candy canes to the people that came to see the trains. She sat by the tree greeting people. Seeing all their smiles was Christmas! FF

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Well ladies
Tree delivered today so we are now all twinkly and Xmasy too ....most of pressys wrapped ..few more to be delivered with the nice white van man !! Amazon /e bay are a lifeline this time of year ..traffic here in Devon is gridlocked with shoppers so avoided the big shops ..
Hope everyone is coping with their treatments and ailments. ..
Hugs xxx🌲🌲🌲🌲

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OK Girls, l'm busy getting my ducks in a row! Surgeon appt. Friday morning. Went to hospital yesterday picked up discs of xray, CT and MRI. Today was family Dr to try and get my blood glucose down. Evermilomus plays havoc with blood glucose. They added another med. Waiting for call back from oncologist to discuss if I have to stop my drugs for surgery and if it's time to change drugs.

 

I have Christmas under control too. Really enjoying my tree and decorations. 

 

Ok, off to work I go. Yes, This crazy lady is still working with a broken back. 

 

Hope you are all feeling pretty good and letting Amazon help with your shopping. FF

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Hi ladies, what a lot to read! I've been absent for a while but only because I'm rushed off my feet getting ready for Christmas and family birthdays and seem to have no time to log in on here to post anything. Well today is the day ha ha so you will see me posting a few more times this morning.

FF , glad to hear your back problems have been investigated and there is a reason behind all your pain. Annoying though that you will have to get this sorted, presumably fairly quickly, at a busy time of the year. Good for you for getting the decorations done and the shopping. I'm still getting all the small bits sorted and decorations don't appear in our house until later in the month. This is mainly because of eldest daughter birthday being in December and I always kept the two celebrations separate when she was small but also because I get fed up with all the decorations after a week or two! Bah humbug as we'd say this side of the pond!

Hope treatments are working well for all SBC ladies whatever they might be and the side effects aren't getting to you.

Nicky x

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Thanks Renee! 

 

Busting my rear getting some things done. Working on lights on the tree. Hoping to be finished it tomorrow and everything packed up. Not allowed to stretch or twist. This week will putt around cleaning and wrapping then. I want to be finished this week getting Christmas ready. Hubby is a good shopper and will pick up anything I forgot. It's supposed to be an easy fix for this, but I want to be ready incase of complications. FF

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hi ff 

i am so pleased for you ,at least you can get on, or try to with your life and have hopefully a better xmas without the worry of what the pain is,then plan your new year with better luck ,this is what i wish for everyone on site

love reneex 

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Good news, ff! So pleased you have an answer.

 

mo

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Thanks girls! I'm OK about this. I was glad for the answer, bc now we can work on the fix. I was just agitated to find out on the weekend when you can't reach doctors. 

Bon,  I can't tell you how many times I've slipped and tripped with this. Hitting pot holes while driving is the worse.It's like anything else that's sore. You keep hurting it when it's sore. FF

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Hi FF I'm glad you know what's wrong with your back now and hope you find some good treatment. Meanwhile avoid tripping over chainsaws, lawnmowers or leafblowers. If he had left a vaccum cleaner in the middle of the floor you might have been able to hope he was going to use it.

love Bon xx

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Ff ..at least u know now the reason for pain. I've heard good things from the cement repair they do on the spine ..I think it's only a day patient thing so u should be up and about more after.
At least in the US. .there is probably no waiting lists to hang around for ...but it's another thing to fit into your busy life ..

Hugs xxx
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Oh ff that's good news because now you know where the pain is coming from you can get themfixed and stop the pain, hopefully before Christmas.

Hugs

ramade xx

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Oh lovely!! Oncologist called at 6:30 PM on Friday night. MRI showed 2 compression fractures. One at T-11 and one at T-12. She says I need to see an orthopedic surgeon bc they need cemented. I guess I will be busy Monday morning trying to find one. FF

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Oh ladies u r putting me to shame with Xmas Dec's. .I ordered a new tree online and it's not arrived so until then ...all the other trimmings have to wait.

Come on mr white van man ..where is my tree ?
Amazon/e bay has been my best friend too for pressys and bits ...🌲🌲


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Carolyn, A dorm room is usually a college bedroom and a lot of them are quite messy! That is how my living room looked!

 

Hubby has the outside decorations up. I have most of the inside ones up. Almost done shopping. Tree this weekend. Amazon has been my new best friend. I will finish shopping next week. I don't go to stores on the weekend. They are too crazy. I will go out next week in the mornings and finish. I really want everything finished by next weekend. I love this time of year but it's been a little overwhelming for me already. I think it's this cold. The nose just won't slow down. Hoping it will end soon! Leaf blower is back in the garage!! 

 

Sounds like everyone is trying to be festive! Dec. 1st let the count down begin. Yikes!!  FF

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I’m not far behind you Carolyn what a knocking out job it is too! I’ve been wrapping as I buy it makes it so much easier, I’m just having a 10 minute break from putting up the Christmas decs, last year I decided it would be a good idea to buy a 7ft tree 🌲 didn’t take into consideration putting it all together and battling with the lights!!
Hugs Janette xx
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Hello ff
I think in the US. .a dorm room means something else than the UK. .here its a room where schoolchildren sleep that are at boarding school and it would be full of hockey sticks and pe knickers !!!
Hope your room is back to normal today. .I always find that mess breeds ...a leaf blower today ..Tomorrow a hedge cutter / lawn mower joins the party !!
Feeling quite smug ..wrapped Xmas pressys yesterday. .still got more to buy but made a start .
Hugs everyone xxxx
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LOL, The coffee table is piled with Christmas presents, hubby decided to use the leaf blower on the front deck! He did finish the deck but set the leaf blower and extension cord in the middle of the living room and went to sleep. If we get out the alcohol it will definitely look like a dorm room.  They better all be planning on cleaning up after dinner or this girl will lose it!

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Evening Funnyface

So sorry you are feeling under the weather at the moment. Keep warm with plenty of hot drinks.

What are men like they love to be in control of the remote. My hubby is terrible. I can leave the room for a couple of minutes and he has changed channels. I have got to watch my programmes on catch up T.V.

Sending hugs across the pond.

Linda

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All sounds good fun in your house FF but u could do with hubby a bit more active to spoil you ..I always find when I'm under weather. .he seems to be too !!
As for the remotes. .you have more chance of seeing the Pope get married! ! My hubs can be fast asleep but the minute I pick up remotes. .he's got inbuilt radar and says " I'm watching that !
Hugs xx
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Ooh Funnyface, sending you hugs - it does sound a bit S&*t for you at the moment (but the vision of your house right now did give me a smile, sorry!)  Grab the remote off hubby, keep warm, and send son out for shopping, including some alcohol for medicinal reasons. Bad enough having all the other things you have to contend with but having a cold as well is just so unfair! xx

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hi ff ,

dont feel bad having a whine as you make every thing going on in your home sound so funny ,i know it's not at all but keep cheerful or try anyway,

love reneex

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Thanks Renee! I  feel bad having a whine when I know you have it tough. Just need this back to quit acting up!  Hope you get some answers Renee and a plan. 

 

Thanks ladies. My house looks like a hospital room. Hubby hurt his back over doing some lifting. He Hastings piled around his favorite chair to make them easy to reach. Son stopped by and he has his arm in a sling bc he tore his bicep and he has this cold too. Lol, he picked a chair and made his comfort zone. I have my comfort spot I call my nest. We all have blankets and pillows, trash cans and tissues. Hubby has the remote! We might have to steal that when he falls asleep!

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ff................I don't post very often at the moment........not much advice to give at the moment. But I have read your latest message...........just want to say we are all thinking of you and sending hugs and good wishes. This will all pass. You have caught some sort of cold to slow you down. There's a lot out there at this time of year. Drink your vit C drinks, and try to support your immune system to get through. And REST!! Spoil yourself. The MRI is a good idea, just to give a baseline for that worrying aspect, but I bet it shows nothing! Look at carolyn.......so worried about new pains, but nothing new there. But the scan is the right thing to do. Keep warm, but of course the winter warmth...........central heating........is not the best for our sensitive bodies........too dry. But it's the best we can do. It's important to keep warm.

 

There you are. I said no advice!! Then I waded in! But the main thing is to send best wishes. Update us when you can. You are a real example to us all.........a really determined lady. But that gets harder when under the weather i know. We all love you! Hugs coming your way! I started my life in the US.........Vermont, then Conn, then Michigan. I 'pledged allegiance' every day and learned to read with Dick and Jane! I have a real soft spot for the US.

 

mo          xxxx

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Hello Renee
Sorry u have not been tickity boo ...but keep strong ..this disease keeps us on our toes but we are woman and seem to find the strength to keep going day in ..day out ..whatever gets thrown at us ...

Sending lots of hugs xx🌹🌹🌹
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hi ff ,

sorry you are feeling so poorly and thinking of youat this time ,i have not been on here for quite sometime as lots of things going hay wire but will let you all know more when up to it ,in the mean time take good care of yourself and get well soon ,also hope you have good news from the scan.

love reneexx 

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Aww FF sending you hugs (((())))) from across the pond, take care keep warm!!
Hugs Janette xxx