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Bone mets - please join in

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Re: Bone mets - please join in

Omg FF, that is terrible! You take care hun!
Hugs Janette xxxx
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FF
I agree jail is too good for these people ..they get fed, watered and pampered in prison ...more than lots of good people get these days.
Just u keep safe ..keep house locked etc etc and don't be afraid to shoot !!!
Hugs xxxx
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There also was a lesson in this as my husband pointed out! Her car wasn't there since it was stolen, so the daughter in law could have just left and said, "I guess she went somewhere!" Thank God, she continued inside to look! That poor lady couldn't have lived much longer without food and water! Four days is a long time for a young healthy person, let alone an elderly person. It teaches us to persue what you went there for. Call the cops if you don't have a key or have any fears! Listen to your instincts! Better to be safe than sorry! I just hope they get this person! They are trying to figure out if these home invasions are related to each other. All of them have been with people home!  People have been hit over the head with a gun and knocked out in most of them. If they have a gun the intention is to use it! We do have one law here in most of our states, if you commit 3 violent crimes you can be sent to jail for life with no parole! Hope if they get this person that this might be possible! Jail is too good for this person!! FF

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Omg FF
That is terrible and what a worry for you especially as u live so isolated ....yep u need to get armed and dangerous as protection but how horrible that u can't just live in peace and quiet with this illness. The world is a horrid place especially when u get older and more vulnerable .
Sending hugs across the pond ..
Xxxxxx
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OK friends I have a new FEAR!! There has been a few home invasions in our area. As in coming in and robbing people in broad daylight while they are home. The one that was in the news today was on the road I live on!  Just three minutes down the road. Last Wednesday a 72 year old lady had just arrived home. She was grabbed by a masked man dressed in black and hit over the head. He then tied her up, put a plastic bag on her head (luckily it was loose)  stuffed her in a closet and left her to die. He then stole her car and left! Her daughter in law had stopped by this past Sunday to do her normal check on her bc she lived alone. She found the poor lady in time! She was in that closet for 4 days before being found. I had drive into town  on Sunday and was on my way home and an ambulance and police car passed me. When I got closer to home I saw 3 police cars at the house, but had no idea this is what happened until I heard it on the news today! This girl us applying for her permit to carry! I already know how to shoot. Hubby and I like to target shoot! I'm a good shot! My house sits way back in the woods! I can't see the road or another house, but this means no one can see anything going down, either. I feel like a sitting target. FF

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Carolyn, Sorry my kindle changes letrozole to that every time I type it!  I missed fixing that one!

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Hello pippin
As far as rads are concerned ...they say two weeks and that's about right ..I had a big one off blast and it was two weeks ...15 months later I'm pain free in that area ...I don't take any pain killers ...the denosumab might give u some bone aches for a few days mid month though ...but I'm sure u will be back to marathon running or bungee jumping soon!
Ha ha ....xxxx
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Hello Doodles, welcome, but sorry you have had to return to the website! I hope you get settled with a treatment plan soon - everyone else is right - it does help a bit knowing something is being done.

 

Janette - I thought it must be a real thread, too! Doh!

 

Pippin - sorry, but I can't help with that - luckily I have never had to have pain control rads (yet, at any rate!), but I'm sure someone will be along soon as I know quite a few ladies have had them.

 

Carolyn - so sorry your teeth are still painful (probably not caused by your cold, then). It's miserable having painful teeth, and all the time you are dreading the visit to the dentist! Well done with the new tablet (but naughty grandson to break it - not deliberate, I am sure though). It is fun setting up a new tablet or phone, isn't it! And the thrill of it arriving in the post!

 

Hugs to all. Barton.x

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Hahaha! Omg I'm a numpty! Thought it was a real thread 😂😂
Janette xx
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Hi Stresshead, in reply to you post of 19th Feb I think you were referring to something else. I had been going on about calcium and vit D, just mundane stuff!

 

Hi Doodles123, I feel for your situation re your kids. My three are a bit younger. I am actively trying to prepare them for when I am not arround. I am very focussed in trying to do this in a positive way and I guess my personality is such that I find the albeit uncertain deadline (excuse the pun but I have a horrid sense of humour which I just cannot get rid of) very energising (not quite the right word but I think you will get my meaning). Appart from the practical things though the emotional side is tougher particularly for the kids.

 

I am at my PC 'cos I am finding walking painful and difficult. I had RADs to hip and pelvis 11 days ago and the first Denosumab 8 days ago.  For a good few weeks before this I was asymptomatic. I want it to get better again. Does anyone have any experience of how long the RAD-related exacerbation of pain lasts? 

 

Pippin

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Re: Bone mets - please join in

Jeanette
The swear thingy is a joke ...as we get bleeped for naughty words ...I'm too much of a lady !!! Ha ha.
Glad to see you posting again ..hope u ok and like me hoping for spring soon ...liking the lighter evenings already ...
Done a little bit of retail therapy lately ..not a big spend but grandson dropped my tablet and so I have just bought a new kindle fire for playing my bubble games on ...my lovely postman brought it today so I'm like a little kid setting up today !! I use my phone for e mail's and laptop for shopping so tablet a small part of my life really !!!
Carolyn xxxx
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Hey Carolyn, what's this "swear Wednesday" thread all about? I'm a bit useless on here I only tend to hang out on the boney thread!
Oh and don't worry I'm doing a good job of eating your share of chocolate! 😆😆aww but seriously I hope you get sorted soon!
Hugs Janette xxxx
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Hi Doodles, yes we all get what you mean about being angry with the world, we've all been there and still feel like that some days! Like you the only thing I thought of when I got my mets dx was my children (25 and 27) it broke my heart. But you do toughen up and "learn to live with it" and like you said this forum is an amazing support.
I hope you get your treatment plan in place soon.
Hugs Janette xxx
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What is metronome ..I've googled and its says its a musical instrument ..doh .
Well at least nothing sinister going on the knees but sounds really painful for you ...surgery on knees is a big upheaval that u probably won't want to go through ....
I do have bone Mets in my right knee but apart from creaky ..manage ok without any pain relief .
I am to see dentist but waiting for a bit longer since denosumab finished 7 weeks ago to see if the teeth get any better ..it seems a different tooth every day ..sounds stupid really but its liveable and yes I've got a nice mouthwash I swig all the time and a very soft toothbrush !
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Carolyn, Yes my knees were scanned last summer . I had a bone scan. All clear. Plus they both had MRI's. It started 2 weeks after I took the letrozole. At first I thought I had twisted them too much while camping about 2 weeks b4 they started to hurt. Then I realized they should have hurt straight away. I went on line and found all the comments on letrozole and realized this was the culprit. They are also worn out! The combo effect if worn out/letrozole isn't good!!! It us working so well on the cancer I won't give it up! 

 

I hope you get to the dentist soon! Some pains I can make it through, others I can't! I'm at my worse with tooth pain. Would magic mouth wash help any? I wish you could have seen me one night. I searched the internet for ways to relieve tooth pain. Ibuprofen wasn't working and I had no good drugs!, I was like a mad scientist mixing up solutions and trying  them. I'm sure I looked like one too with my reading glasses and robe on, plus my wild bedhead hair! 

 

Have a great day! FF

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Hello doodles ..love your name
Unless I back read your last posting ..i cant remember if you know yet what treatment you are having or are you still waiting to see oncologist ...once I had the dx ..I was put on letrozole, adcal had rads and a hip op within a week .so nhs did me proud . ( and hospital dentist took out two teeth ready for denosumab the same week!!)
Anyway ..why not join in Wednesday's swear day !!
Carolyn xxx
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No worries re the SD. It IS good to laugh tho, isnt it? Have been giggling all week.

 

Now back to bed for a short snooze

 

Mx

 

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Thanks moijan
I feel like putting the teeth miles away on a naughty step somewhere else.
It's got a good side ..I only eat soft food now and am loosing a bit of weight but can still manage to suck the chocolate !!
Next step ..Heinz baby food !! Ha ha xxx

Ps : I'm not leading with the swear day on the other thread ...u suggested it ..so you start ..people might think I'm not a lady !!! Ha ha
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I think you are all amazing every single one of you. I was told last week I have bone mets and I've not been handling it very well at all. I'm angry at the whole world right now. I feel so much better already having read some of your posts. And I do have hope for the future. I'm just stuck in limbo right now. I know from last time once a treatment plan is in place I'll start to feel better. It's just so hard to come to terms with. Like others have said , more than anything I don't want to leave my 3 daughters who are 17,20 &23. Love to all xx
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Hi Carolyn

Hope your teeth stop being so very naughty... you could try sitting them in The 'naughty chair'. Seriously tho.... I'm sorry you are suffering xxx hugs, Moijanxx
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Hello FF
Thanks for asking ..yes tooth pain comes and goes but is worse at night ...its not any particular tooth ..all of them but not jaw pain that is a side effect of denosumab.
Will see dentist but waiting a bit to let denosumab out the system a bit more before being prodded and poked !!
Reading your post about your knees ..you must be really struggling to be taking that amount of painkillers a day ..have your knees been scanned as the normal ct one only covers the torso ?
Carolyn xxxx
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Carolyn, Thinking of you! Hope are able to get the tooth pain under control. I know for me they always hurt more at night. I'm a baby when it comes to pain and sleeping! I think it'sbc I don't sleep well in a goodnight let alone a badnight. My husband can sleep through anything. Sending you HUGS! FF

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Avrelia, I second call your nurse or doctor! That said, I will admit I'm great at letting myself suffer til the next appointment. Letrozole has made my knees scream! I'm on oxycodone + 3 ibuprofen for them and they still hurt! It brings the pain level down from a 10+ to about a 6 on mist days! Some days it does nothing! I find it works better if I keep on a routine with it! Good luck! FF

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Avrelia, meant call the BCN!
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Aveelia
It's worrying you, so best not leave it... why not ring the BCC and if she can't help, then try and get an earlier appointment if worried

I too have painful knees... often letrozole or other hormonal tabs seem to do it, but mine have always been painful from lifting patients in an earlier life!
Do seek help. I find losing weight helps, but actually I've lost weight currently and knees still hurt.... but am not screaming( yet) like you do try and get some reassurance xxx
moijanxx
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Hi all, the discussion about surgery is postponed for the time being, as my CT scan showed good response in December, but my bone scan showed some new sclerotic mets. The conclusion of the oncologist for the time being is that they cannot call this progression, but she needs to do another scan in the end of March. Meanwhile i got a horrible knee pain just a week ago, and it is getting worse. I cannot fold my leg, whithout screaming of pain. Have tried ibuprofen, paracetamol, nurofen, gentle massage with ointments, none of them is working. I have read somewhere that it might be due to tamoxifen, or a post effect of chemo. Anyone having such problems? My knee is a bit swollen too, do you think that I should make an earlier appointment with the oncologist, asour next one is due on 5.04

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Hi Funnyface Nice to hear from you again. I was put on denosumab about 3 months after starting exemestane which tends to make your bones brittle. I have achy joints but have never known which of denosumab, calcium or exemestane is responsible, maybe all 3. I had 2 bone mets when I started.

B xx

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Hello FF
Well hope things are ok with you now and its always the simple things we take that give us problems ..99% of the ladies here have no probs with denosumab but trust me to get a wobble with it !!
Carolyn xxx
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Hello Helen
Nice to hear from you and sorry kadcyla has let you down but you can now join the erubulin club on the other thread ..lots more ladies seem to be getting it now and probably you can support each other.
Yes I need to get back on denosumab asap once the teeth get better.
Carolyn xxx
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Hi Funnyface

I just have the one met at L4 and have the denusomab jab every 4 weeks and take 1 adcal a day. I have a phobia about teeth so regularly have nightmares about ONJ but apart frm that (LOL) I don't have any side effects from the treatment itself.

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Carolyn, My onc had said if I didn't want to do the denosumab to increase my calcium to 2 daily. I never have many problems with medications, but if I do its often some simple medicine that gives me a problem! I took the second calcium I hurt everywhere (worse than I already do) and severe stomach ache. The one tablet doesn't bother me! I also had a rough time with metformin, very sick on it. I have to take extended release. Yet, I can count on one hand how many times I've had to take an anti-nausea for chemo. Crazy! I was just wondering if people with just one or 2 bone mets take the bone strengthened or if oncologist wait til you have more. I did a bone density test when I started metronome, but they haven't checked it since. Maybe, I should have that checked. FF

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Hi Carolyn

Sorry to hear you're having problems with your teeth, hope you get it sorted soon. Touch wood I have been ok with my teeth in the last 4 years that I have been taking denosumab - I call it my wonder juice, it seems to keep my bone mets stable, shame the liver ones have to spoil the party Smiley Frustrated

Take care everyone, all the best with your treatments. I have started eribulin today so fingers crossed this works for longer than kadcyla (5 cycles).....

Love Helen x

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Hello FF. ..welcome back ..missed you and hope u r de stressed and ready to join the mad house again!! Ha ha.
My oncologist says he likes three months before any dental work but obviously if you loose a front filling on Xmas eve like I did ..it's not a choice!
When I first got dx with bone Mets my oncologist said that eating plenty of dairy was better than any treatments she could prescribe !! Soo I eat plenty of yoghurt and proper butter ...will probably end up with a heart attack now but hey hoo ..I'm trying to do the right thing.
I wouldn't like to say either way whether denosumab would be right for you as I'm a numpy with medical stuff but it does have side effects !! ( well for me !!)
I'm also going to ask about taking more adcal calcium tablets daily as I only take one at the moment.
Got hurricane Doris here at moment ..it's very windy and carrier bags and things seem to be floating past my Windows !!
Carolyn xxxx
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Ouch! I hurt just reading about your teeth problems ladies! I have never had strong teeth. Mouth full of root canals and crowns! One tooth had two root canals, which I didn't even know they did! Last year I lost 3 molars all in different sections of my mouth. Luckily you can't see them when I smile. My oncologist suggested denosumab for my one bone met last summer. I refused bc of my teeth. Also the bone has been stable for years and somehow no one had even told me I had it for years. Curiosity question here.How long do you have to be off denosumab to have dental work? Also do you bone met girls think I was crazy not to take the injections with one bone met. The bone met is in my spine at T-11! I don't want my spine to crumble or anything bc I didn't do the bone jab. 

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Hiya ladybird
Wow u must be a VIP or something to get a home visit from the doc !! It takes weeks just to get a appointment at our heath centre !
What a shame there is so much pressure on nhs these days ...I remember as a child ..doc being called and then him sitting down drinking tea and eating my mum's scones so relaxed.
But that does show that laughter is indeed the best medicine !! Hope everything is tickity boo with you.
Xxxxx
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Morning Ladies

Thus should cheer you up...

Our doctor visited us at home this week which was a first for him. He's a very jokey type of person and we have a few laughs when we see him. As he walked through the kitchen he was turning back to me and making small talk when he completely missed the carpeted step into the lounge.

He went flying in a crumpled heap on the lounge carpet. He then started to laugh almost hysterically and when we realized he was ok we all laughed like never before.
We were all in tears!
They say laughter is the best medicine, it certainly was that day.
He asked me not to tell anyone:-)
Keep smiling
Xx
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Bel
Very envious of your summer house too ..think of all the relaxing you can do in it and make sure no one starts using it as a dumping ground for their stuff though ...
i think with spring coming we will all feel a bit more energetic and the bones less achy .
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Hello bel
That was a very expensive strawberry Bon bon but hope u enjoyed it. I only take one adcal a day and was wandering whether I should be taking more as my teeth are so weak so I must ask.
I have always been fine with calcium levels but it is a very strong injection and can cause this sort of blip.
I'm on letrozole but I'm sure I read here that ladies on faslodex do get very tired as its a side effect of it but if its doing its job ...then go with your body and take little naps etc !!
Hugs Carolyn xxxx
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Hi Caroline and everyone else.

it must be that time of year, I was chomping away on a lovely strawberry bonbon at the weekend and found a very large filling embedded in it! That will teach me, but I'm not really a chocolate fan unlike you!! 

Well went to have my 7th denosumab on Monday and they postponed so that I can have the filling replaced! But then in checking found my calcium levels too low to administer anyhow. Now on double doses of calcium! 

Have you ever had low calcium levels? 

Anyhow not a wasted journey still had my faslodex injections. Now got the usual sore buttocks!! 

Im a bit washed out at the moment I think that it's finally hit home my SBC, feeling very fed up, visited GP whos prescribed anti depressants and sleeping pills for a month to help get me back on track,.

The hardest thing is looking ok, mind ok and wanting to do stuff, like work, gardening and outside stuff (we moved to a small holding 6 months prior to my SBC diagnosis)  but body not cooperating! 

Im hoping this is only a blip and things will pick up once the sun shines! 

Any advice would be appreciated! I've just bought a summerhouse so that I can sit outside even when a bit chilly, hoping that once it's up in about 3 weeks it will cheer me up.

sorry for the long post.

love to all

 

Bel xx

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Hello didi
I think I'm one of the few that is suffering a little bit with denosumab ....but I have bad teeth and had to have two big ones taken out before I could start 14 months ago too.
The first 6/7 were fine but then I started getting a lot of bone pain with it but very easy to cope with ..paracetamal.
I had a easy filling done ...no drill or injection and then two weeks later had denosumab and it seem to make all my teeth sensitive etc. I lost another filling and have broke one so I've stopped it to get the dental work done. I also had a cold and it seem to hit my teeth and gums too.
I'm sure you will be fine with it and its a very good treatment with good results. I will start it again asap.
Carolyn xxx
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Hi Carolyn sorry you have tooth trouble.i hate going to the dentist too. I might be starting denosumab soon when bone scan results come in.could I ask what side effects you get from the injection?i need a broken tooth and root removed in hospital (7th march).once on denosumab can you have dental fillings etc .the list of side effects worries me especially the joint/bone aches as I am on letrozole and getting terrible stiffness in joints/aches in bones so couldn't bear it getting any worse.take care Didi

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Hello ladies
As its been quiet here the thread was slipping down the list so I thought I had better post !!
Well my denosumab was cancelled this week as my teeth are all playing up so need a dental visit ...aagh hate it. Didn't miss the blood test either as veins vanishing when they see the needle.
Hope everyone is ok and coping ...
Carolyn xxxx
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FF...,will miss you. Have a good rest and come back to ys as soon as you can.take care..lots if love, x

Pippin, I have calcichew tablets..I will check what's in them. They are quite big and I prepare to swallow rather than chew them,although when I was in hospital the nurse made me chew them as the ingredients are released quicker and better??.x

 

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Pippin, i too have been thinking sabiut this stuff for a while but want ghe right stuff from a reputable place...are you orepared to share yoyr source? You can pm me if you feel able to.x

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Jeanette
Oh the thought of a creme egg makes me want to rush to the shop and buy one now.
I used to have a posh friend ..used to cut the end off and use a teaspoon to eat the inside ..not for me ..just plough right in ..sod the mess !!!
Carolyn xxx
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Hey Carolyn, my hubby has just home with a Cadburys creme egg and mini eggs.....my first of many! 😆😆 Hugs Janette xxxx
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Hello Barton
Yes feeling quite chirpy ..no actually high on chocolate again ..ate a whole Terrys choc orange ..gave them up for a while ..tried after eight mints as thought dark choc more healthy and mint good for my heartburn but not keen !! Managed a large box of chocs this week courtesy of hubs for Valentine's day ...
Trying to resist creme eggs that are in shops ..not for health sake but for my sensitive teeth !!
Carolyn xxx
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Hello Maldives, sorry to read you are suffering with nausea. Did the hospital give you any pills for that? If not, I should ask for some.

 

Carolyn, you sound chirpy this morning! I have several drawers like that, not just one! However, I do still have all my cutlery - apart from 1 teaspoon, which I think I must have chucked away with a yoghurt pot years ago!

 

Hugs. Barton.x

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Ladybird, so glad the MacMillan Nurse is so good - it's wonderful feeling that someone cares enough to go the extra mile for your wife.

 

Hugs. Barton.x

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Hello B, glad you had a lovely week in Dorset -reminiscing is great, isn't it?

 

That's a bit extreme of the hospital, isn't it? Over a month and a half postponement! And that's two whole months from today! No wonder you are upset. I sometimes wonder if they realise how much it affects all of us anxiety-wise.

 

Hugs. Barton.x

 

Edited to add: Yes, looking forward to next Friday!