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Bone mets - please join in

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Re: Bone mets - please join in

hi carolyn

thank you so much for your reply and how much I relate to what you are saying. I am just getting there with my feelings and thought it was time to get to know some of you who are going through similar situations. I will be posting on here on a daily basis and hoping that my experiences can help others and that they can help me too.

i feel better already knowing that you are all there.

i have just ate my chips and graves so now I am going to bed down and watch a film. Tomorrow I have a busy day and we all need to enjoy the bank holiday weekend. 

Onwards and upwards

thank you again xxxxxx

Member

Re: Bone mets - please join in

Hello Janette, just a short note to wish you good luck with your head CT scan. I know you don't want it, but it will put your mind at rest when it comes back clear. Hopefully it is just the stress of all this.

 

Hello Victoria, sorry to read of your recent diagnosis. You will find all the ladies on this site are exceptionally friendly and helpful, so feel free to rant and rave if you need to. We do, however, also very often have a good laugh! You have certainly been through it recently. I hope you feel better soon.

 

Hugs to all. Barton.x

Member

Re: Bone mets - please join in

Oh Jeanette
I know you didn't want the brain scan but it will put your mind at rest ...hopefully before your holiday so you can relax and enjoy.
I didn't think you could have ct scan on head ..must be wrong ??
You will hopefully get a urgent appointment now .
Hugs xxx
Member

Re: Bone mets - please join in

Hi Victoria, sorry you have had to join us but I can assure you that you won't feel isolated or lonely with us ladies for support her. 

Sometimes people just don't know what to say to you when you are dx with this disease, they just "don't think" sometimes do they!  

Take care, hugs Janette xxxx 

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Re: Bone mets - please join in

Hi ladies, spoke to my bcn today about my headaches and could it maybe anything to do with clicking jaw, she has spoke to my oncologist who has now requested a CT of brain 😯 really didn't want thus but suppose it is better to check up on it.......just when you think things are going ok something else has to rear it's ugly head for you to worry about!!!

Hugs Janette xxxx 

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Re: Bone mets - please join in

Hello Victoria
Firstly welcome to this thread and hopefully you will get sone support and kindness as we are a friendly lot here.
You must be devasted to be dx after having preventative surgery . Phew u have been through the mill the last few weeks but sound like you are coping.
The thing I hate is that people think that because you have cancer and walk with a stick ....we are deaf as well !! And lean over and say " hello and how r u today " very loud and slow. Sometimes feel like shouting back " I'm fine now ?ugger off don't need yr sympathy "!!
Or other people that think you take a few pills and you are cured ...and say oh the treatment is marvellous these days !!!
Ladies here are very strong, positive and very helpful so please stay with us.
Carolyn xxx
Member

Re: Bone mets - please join in

Hi a new member here. 5 weeks ago was told have secondary's in bones. I am also a BRCA1 carrier and had preventive surgery last year which was why I thought I was in pain from the surgery after effects. 

I thought it would be nice to chat with a few on you lovely ladies after reading your supportive messages as feeling quite isolated and life has changed. In the last 4 weeks I have had spine surgery and a new hip. Feeling well but get fed up of people telling me this!! Getting quite frustrated with people who think I can not fasten my seatbelt or hold a teacup!! Need some smiles 😃😃😃😃

Member

Re: Bone mets - please join in

Hope everything goes well with your drain Sharon and you get home soon thinking of you ❤❤❤
Community Champion

Re: Bone mets - please join in

 Glad you got moved to the correct area! The sooner you get drained the better. You will get better! Hope it's cooler! FF

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Re: Bone mets - please join in

Hopefully it will b quieter now for you on the different ward ...you will probably be glad to get the drainage done and as u have already had it done before ..Will know what to expect.
It's always the fear of the unknown that gets me !!
We are all thinking of you and keep in touch with us.
Hugs xx💜💜
Member

Re: Bone mets - please join in

Hi all..well got transferred to proper ward today..drain will be done in about one hour

Xx
Community Champion

Re: Bone mets - please join in

Hi Sharon, hope you had a good night? Those blasted lights are still on at night( tho dimmed) arent they?

good luck today. As Carolyn says you will feel much better afterwards....seems a little cooler today.

 

hope you have a nice supper this evening to make up for any deprivation!!

 

hugs

 

Moijanx

Community Champion

Re: Bone mets - please join in

Hi Janette, just remembered, my partner gets a clicky jaw when hes stressed, quite a lot actually!

 

Also I had a lot of headaches, neck aches and sciatica, all just prior to starting this chemo and I thought' how can they still consider putting me on chemo when i feel so very unwell?' But they did, and the symptoms all went away. I also get jaw ache and my dentist says i grind my teeth in my sleep, which is also a stressy thingy. 

 

If the headaches come and go, esp after a neck massage then seems more likely its a stress thing.

 

obviously kerp getting things checked if you are worried...thats what the oncs and bcns are there for

 

hugs, Moijanxx

Member

Re: Bone mets - please join in

Hello everyone
Sharon ..best of luck with the drainage ..u will feel better once it's done.

Well it rainned heavy in night and yes ..forgot to take in washing and patio chair cushions so both all squelchy.
Hope its good for bank holiday ..we have grandkids down and need good dry weather .
Hugs xx

Member

Re: Bone mets - please join in

Morning ladies. 

Sharon, I hope you have managed to get some sleep, I know sometimes hospital is the best place to be when we are unwell but I absolutely hate the places! Think it stems from the many years I spent as a child /adult visiting my mum! Hope you are soon back home in your own bed.......bliss!!

Helen, you make the most of enjoying the sunshine in Spain as per usual the weather has changed today and is wet and cloudy  (well it is in manchester).....no change there! 

Hope everyone is okay, good luck to those having scans / results this week. 

Hugs Janette xxxx 

Community Champion

Re: Bone mets - please join in

Hi Helen,

 

enjoy your holiday. Wish id. Been more proactive before current treatment! Yes its actually 80 degrees in my bedroom...have just come home and put on a couple of fans...anyway, we did have a nice bout of rain during the barbecue i was at earlier!

 

hugs

 

Moijanx

Member

Re: Bone mets - please join in

Hi all, currently enjoying the sun in Spain, but sounds like I could have saved myself £££ and stayed in Blighty for the weather! 

 

Sharon, so sorry to hear you are in hossy... Nightmare. Hope you are getting hubby to bring some nice food in and catching up on the zzzzz during the day if possible. Xxx

 

Janette - I too had headaches a few yrs ago and I think the thought of mets made me more stressed and brought on more headaches. Hope yours dissipate and all returns to normal.

 

much love from Costa del sol ☀️ And hugs to all,especially those going through tough times right now. 

Helen xxxxx

Community Champion

Re: Bone mets - please join in

Janette, I hope it stays away!

Sharon, I wish I could ship you a fan, you would be out before it arrived across the pond.

Member

Re: Bone mets - please join in

Thanks moijan having the drain tomorrow so if its the same as last time ..il be I. For another few days..thanks for messages everyone.sharon
X
Community Champion

Re: Bone mets - please join in

Hi Sharon, its 'hairless hattie' here....hope you are feeling a little cooler, At home, I sometimes wet and wring out a towel, or tea towel and lie under it...as it dries  I cool down, maybe just a wet flannel or tea towel around the neck might help? Tomorrow i will be at the end of a b drip, so I guess will have a little of what you are getting if its still hot!

 

hope you are feeling a little better and that tomorrow will see you going home!

 

lots of love, Moijanxxxx

Community Champion

Re: Bone mets - please join in

Hi Sharon lets hope you get some satisfaction tomorrow and the drain helps to give you some relief and i hope you get onto the right ward. Not getting any sleep in hospital is bad enough but when the other inmates are in another world it can't be very pleasant.

Thinking about you Love and (((((hugs))))) xxx 

Member

Re: Bone mets - please join in

Thanks Waffles / FF, it has eased off again today and my jaw hasn't been clicking either so wonder if there is some connection??.

Hugs Janette xxxx 

Member

Re: Bone mets - please join in

Hi having drain done tomorrow..so at least get rid of this uncomfortable state..i have to convince some Drs I have ascites because I am very slim so if you knew me you'd know
But as they don't know me I think they think its just bit middle aged spread.
Hope all ok with everyone else ❤
.sharonx
Member

Re: Bone mets - please join in

Sharon.
Hope u get some answers and can come home quickly and then you can sleep eat and
Fart in the privacy of your own home !!
Phew that's hot on the ward ..but maybe without fattening food and sweating you will loose a few pounds so it will b like going to a health farm ...ha ha.
Love and hugs xxx
Member

Re: Bone mets - please join in

Carolyn.your comments about the others on your ward made me think.
All I do at moment is sleep eat and fart.❕ x
Member

Re: Bone mets - please join in

Hi all still waiting proper ward..and having a ultrascan at three so am starving..its 32 degrees in Southend and the ward is hot..but they are letting people bring small fans in...so have asked hubby to try just to pickup the handheld mini one..as the fan we have at home is too big.hope to get out asap.sharonx
Community Champion

Re: Bone mets - please join in

Sharon,

Hope you are on te onc ward now and able to get a bit of peace, it doesn't help being so disturbed all the time, I  know the patients can't help it but it doesn't make it any easier to deal with.

Hope they can get the bottom of things and get you comfortable and back home soon.

Sending you strength xx

 

Community Champion

Re: Bone mets - please join in

Janette, A few years ago I had terrible headaches in my temple and clicking jaw. I left it go for several weeks. I was in my way home from work and had to pull over. Called my husband in hysterics to come get me that I thought I had brain mets and that I couldn't finish driving home.My oncologist was able to get me in for an MRI the next morning. No mets, TMJ! It finally went away except the clicking! I had gone weeks being sacred because I didn't want to have  that MRI, J didn't want to go down that path! I hope you get a MRI and you get good results.Hugs! Take care of you! FF

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Re: Bone mets - please join in

Good morning Sharon.
Hope u have seen the oncologist this morning and poor you being on a ward !! When I was in hosp last year for six days ..I was the only one under 80 and all they did was sleep, eat and fart!! But its not a five star hotel and we cannot choose our company but hey ..thank goodness for the nhs and our free medical service.
Sending loads of hugs xxxc

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Re: Bone mets - please join in

Hi Janette,
About a year ago, not long after my secondary diagnosis. I developed a a severe, pretty persistent headache which lasted about 6 weeks. The headache suddenly stopped but a few days after it did I had a CT scan of head which showed nothing at all and the headache has never returned.Still no idea what it was but I was convinced it was something awful while it lasted. Best wishes xxx
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Re: Bone mets - please join in

Thanks Julie /Carolyn. Might give them a ring later, might sound daft but I really don't want to go down the brain scan road! Just praying I'm having a bout of migraines 😕
Hugs Janette xxx
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Re: Bone mets - please join in

Sharon, I'm so sorry to hear you're in hospital and also not on the ward that you need to be on.  Let's hope that things change today and you start to get the treatment you need in order to get home.  Sending you lots of love and hugs.

 

waving to everyone else.  Good luck with scans/results/treatments.  A hot few days down here, so trying to get things done in the morning so can rest in the afternoons.  

 

Huge hugs,

 

hxx

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Re: Bone mets - please join in

Scratch  What a dreadful night for you  Let's hope you can be transfered to another ward today. Maybe threatening to discharge yourself will have some effect. Hugs xx

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Re: Bone mets - please join in

No didn't buy a lottery ticket .so didn't win.x❤ ,
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Re: Bone mets - please join in

Still here getting no sleep..lots of dementia people on ward...feel like signing myself out
Iwas supposed to go to oncology ward yesterday but they had no beds...its hot stuffy.iv had about 3hours sleep.someone in my ward had a dementia turn shouting at nurses for about 3 hours.not their fault
..fed up.x
Community Champion

Re: Bone mets - please join in

Hi Sharon, hope today went well and you are feeling ticketyboo? Did you win the euromillions? Also hope you mum is recovering. Lets hope your stay is a short one so you can go skipping home asap

 

talk soon

 

hugs,

 

Moijanxx

Community Champion

Re: Bone mets - please join in

Jeanette, I  do get a clicking jaw but I  had it before I  starte Zometa so don't think mine is related. However, yes, the jaw could be causing your headaches, talk to yur team again. Good luck xx

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Re: Bone mets - please join in

Hi all - I'm recently back from a 10 day trip to Italy, so been out of touch for a while.  Sorry to hear not everyone is feeling great at the moment - the heat doesn't help does it.

Was able to put all things cancer related to the back of mind while away, but back to reality with PET scan tomorrow - the next couple of weeks are going to be long while waiting for results.

Take care everyone xxx

Member

Re: Bone mets - please join in

Hiya Jeanette
Can't help with that one ..hubs says I have a busy jaw!!
I have all sorts of other side effects with denosumab but not that one ..yet.
Hugs xxx
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Re: Bone mets - please join in

Evening ladies, can I ask does anyone who is on denosumab get a clicking jaw?? My jaw has stated clicking a lot lately and I'm wondering if that could have anything to do with the headaches I keep getting? Been suffering again all day with yet another! 

Hugs Janette xxxx 

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Re: Bone mets - please join in

Thank you Barton I keep thinking this can't be right or maybe it's early days . Hubby keeps saying do you feel ok . Yep is my answer to that. Then you can't help but think is it working lol no pleasing me hugs
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Re: Bone mets - please join in

Glad you are feeling ok, Corey. I hope it continues for you!

 

Hugs. Barton.x

Member

Re: Bone mets - please join in

Hello Sharon, so sorry you are back in hospital! I do hope your stay is short, and as pleasant as a hospital stay can be and glad the food is OK.

 

Hugs. Barton.x

Community Champion

Re: Bone mets - please join in

Sharon sorry you are in hospital and hope they get you comfortable quickly and sorted soon so you can go back home to your own bed and bathroom. Sorry to hear your mum is there too but I  guess it means visitors can arrange their times a bit, two for the price of one Man Wink Aweiously though, I  send you healing vibes and a gentle hug x

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Re: Bone mets - please join in

Hi Sharon, sorry to hear that you are in hospital, hope they get you sorted soon! Keep your chin up 😉

Hugs Janette xxxxxxx 

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Re: Bone mets - please join in

Hi all not too bad just awaiting oncologist decisions....it would have been too hot today for me at home anyway....dinners ok.cant beat your own bed and bathroom though can you.my mum I in here as well as had a fall and broke her arm..so everyone doing two visits on one to see us..obviously not on same wards
Xxsharon
X
Community Champion

Re: Bone mets - please join in

Hi Sharon, sorry to hear you are in hospital hope they sort everything out and get you home again soon,

i also hate being in hospital....maybe you will win the Euromillions whilst you are in there if hubby gets you a ticket.

 

hope you are feelng comfortable?

 

lots of love,

 

Moijanxx

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Re: Bone mets - please join in

Hello Marie
Sorry u having a rough time but I'm sure u will feel better soon.
Sending mega hugs xxx
Community Champion

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Hi all,

Sorry I haven't been on lately. So sorry smoe of you are having a rough time.

Be gentle with yourselves , hugs to all . M xxx

Community Champion

Re: Bone mets - please join in

Hi Sharon sorry you have ended up in hospital I do hope they get you sorted soon.

Hi Corey best of luck with your chemo I do hope the se will be kind to you.

Hi everyone else what a lovely day just popped in to get cool this weather is unkind to me but will suffer a little more So popping back out.

 

Love and (((hugs)))  xxx