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Bone mets - please join in

Bevlaar
Member

Re: Bone mets - please join in

Pam have a lovely holiday! Hope your hands and feet have a well deserved rest!
My velindre appt on wed is 11.30 so may see some of you. Su...will prob be there around same time as me. Kaye..you may gave gone by then but if not we should introduce ourselves. I can pm you my mobile number if u want to text me.
Dont know what time liz's appt is?
Good luck to everyone. Love bev xxx
2catlady
Member

Re: Bone mets - please join in

Afternoon ladies,
Tracy,I know what you mean . It really preys on my mind too xxxxx

Pam,have a fab holiday and recuperate your strength for next round of kicking the little #s xxxxxxx

Liz,hang in there we are all here for you and I understand how you feel ,I'm still shell shocked after a couple of months xxxxx

Kaye,thank you xxxxx

Bev and chocolate hello xxxx

Tink,how are you doing? Are you okay? Xxxxx

Huge hugs to everyone ,stay strong,Helen xxxxxxx
bertie1
Member

Re: Bone mets - please join in

Hi Flo good job you spotted the signs early and it was acted on quickly ,I had that on my first Chemo but I felt quite rough with it.Hope you're feeling better and good luck with the Picc line
it does seem as if there are a few of us down there feel free to come and say hello if you hear my naw being called.
Kaye xxx
bertie1
Member

Re: Bone mets - please join in

Hi Pam hope you have a lovely holiday relax and enjoy you deserve it this Cape is tough
Kaye xx
pam01
Member

Re: Bone mets - please join in

Aftenoon ladies....just thought Id post to check out with you for 10days....going to Andalucia tomorrow am.......Ive had a bit of a rough 2 weeks or so with very sore hands and feet...but finished capecitabine last tues and was seen that day cos Id be away this week......going to have 2 weeks off whilst away...they are improving as is my fatigue so hopefully all good for the holiday......markers were stable last week.....Good luck to everyone awaiting results or to start treatments....be back soon!!xx

Desi-2
Member

Re: Bone mets - please join in

Morning ladies Helen that is my worry also it's still relatively early days for us how will they be further down the line.mthey don't seem to be able to put themselves in our shoes!
Flo could I ask what the warning signs were if you felt quite well?
Tracy xxx
lizH
Member

Re: Bone mets - please join in

Sorry to hear that flo, nasty. Hope things are better for you

X

lizH
Member

Re: Bone mets - please join in

Hi ladies,

have reached the start of another week, with liver diagnosed and more chemo to have when told on Friday , I am feeling a little bit better but it comes up like a physical bang in the chest when you don't expect it!

I have rang the hospital to see if I can get a line in before any treatment begins, it not will they just go for the veins and do it another time? I feel restless to get on with the taxol now! Mixed feeling of dread and wanting to start killings the b********s!

Hope all are doing ok.

Liz xx

2catlady
Member

Re: Bone mets - please join in

OMG! Flo,so glad you spotted signs. Glad your home and doing okay.
Take it easy,huge hugs,Helen xxxx
su-bee
Member

Re: Bone mets - please join in

Hi

Seems there will be lots of us in Velindre on Wednesday, I'm in at 10.30, Kim is also in on Wednesday !

Su

Downbutnotout
Member

Re: Bone mets - please join in

Good morning ladies - just a quick post as I haven't caught up on how everyone's doing yet so will work through it later. After going to my home on Wednesday morning I ended up in my local hospital with neutropenic sepsis that evening and just came out yesterday afternoon after being on IV antibiotics and having a platelet transfusion. Fortunately I have felt well the whole time, it was just that I recognised early on that things weren't quite right.

 

Hope everyone's as well as can be expected. Will check up on you later and post again. Off to try for a PICC line again.

 

Flo

X

bertie1
Member

Re: Bone mets - please join in

Morning ladies hope we,re all ok today,woke up to lovely blue sky but it's raining again now grr.
Bev people need to realise that some diseases don't show on the outside you don't have to be old or on a walking stick to be entitled to blue badge.I too have clinic on Wednesday at Velindre my appt is 9.30 maybe we will see each other.Good luck with your scan results.
Helen nice to hear from you was abit worried as you've been quiet over the weekend.
chocolates thanks for the add on FB everyone has been so friendly
Hope all other ladies are doing ok.
Love
Kaye xx
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies,hope we are all okay.
Tracy,hugs to you xxxxx

I agree with you about blue badges and old people ! I'm sick of being stared at if I park in blue badge bay. I'm like you Bev,I want to shout at them.grrrrr.
Good luck with CT scan Bev,we are holding your hand xxxx

Oh,chocolate,new term,yackkkk ! Take it easy,Christmas term is a hectic term xxxxx
Jenny,I'm like you if I have a hard mattress I can't sleep as too painful. Memory foam mattress toppers are good but I got a thick one and found it impossible to turn over on. So needed a thinner one. My lever I have on bed to help me turn really helps too.xxxxxx

Oh,juile d,good idea about taking it away with you. I might do that too. Perhaps a single one for my side.xxxxx

On the note of OH I had terrible pain in back last week and struggled to bed. I asked OH to put cream on feet and he said he had work to do and couldn't !!! I was sooo upset.Before that he'd been lying on sofa playing on iPad for an hour grrrr. Talk about feeling like a burden. I do worry what he'll be like when I do need more care.
Sorry just having a rant ladies.

Well sun is shinning in NE today,yippee! So going out with sister later today double yippee!
Huge hugs and stay strong,Helen xxxxxx
Bevlaar
Member

Re: Bone mets - please join in

Same happened to me Kaye. Parked in disabled bay at asda last week and there was an elderly man on a walking stick standing in front of my car. When i got out he looked me up and down then made a point of looking at my dashboard for my badge!
Sometimes i just feel like shouting "ive got incurable cancer in my lung...what have you got?"
So unfair.
Anyway as its a wet old day today will be making my xmas cake! Ive had the fruit soaking in brandy overnight. 😉
CT scan tomorrow and clinic on wed to pick up more peachy pills!
Hope everyone else is ok...love bev xxx
Desi-2
Member

Re: Bone mets - please join in

Thanks for your supportive comments ladies xxx
Helen hope your okay today love and hugs to you xxx
bertie1
Member

Re: Bone mets - please join in

Janette I can understand you saying you feel like a fraud,I parked in the disabled bay in Asdas one day in the week and had people looking at me but at the end of the day people don't understand this disease and just because you look ok doesn't mean to say you are.we are entitled to these benefits and we shouldn't feel like this just enjoy the extra money.Hope everyone else is doing ok

Kaye xxx
tomboy81
Member

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rosie53
Member

Re: Bone mets - please join in

Hi Desi, sorry to hear you are having a crap day with oh. Hope its got better as the day has gone on, sending you a BIG hug 🙂
Hi to everyone else hope your all ok, iv been out mobility car hunting...feel like a fraud i can see the salesman are thinking "shes not disabled" 😞
Take care hugs Janette x x
JulieD
Community Champion

Re: Bone mets - please join in

I have a matress cover/topper on my bed at home I also take one away with me if I'm not sure about the bed when I'm away from home! It does mean you have a litle more in your luggage but they roll up and are light and can be left in the car boot if it turns out you don't need it.

Tournesol
Member

Re: Bone mets - please join in

jenny29, I can't sleep on hard beds any more either - when I'm away I often end up sleeping on top of part of the duvet or I'd get no sleep. Not so easy when it's cold or if sharing the bed though. At home when I had a hard bed I bought a memory foam mattress topper which helped.

 

Best wishes,

 

Tournesol

jenny29
Member

Re: Bone mets - please join in

Me again. I've just remembered an issue I keep meaning to ask about. Beds! Does anyone find softer matresses suit them better? I'm finding when I go away and stay in a B&B the beds are so hard. I find them too hard for me and have had some very uncomfortable nights.  I dont know if its my bad back or my bone mets.

jenny29
Member

Re: Bone mets - please join in

morning everyone

 

So many posts since I posted a few days ago but I love the support that everyone offers to each other.

 

Cant remember if I've already said this but FYI bone mets diagnosed june 2013 and have been on denosumab and tamoxifen (with side effects) since. Take clonodine and paracetamol. I've had a 'bad back' for many years which gets uncomfortable and achy but my oncologist told me it was a seperate thing. It does mean I find it dfficult to know what aches are related to the mets.

 

Friday was a typical example: night a mixture of sleep, hot flushes and achy legs, woke up achy, did a couple of hours work and went into town on a few errands, by the time I got home (about quarter of an hour walk) I was tired and a bit stiff/achy, so ignored the housework again (which always aches) and had a catnap.

 

I have my next scans coming up, which feels a bit scary as in the back of my mind is the thought that at some time, things are going to get worse but I dont know how/what and when. Then I get that feeling that there might be something more I could be doing to help myself and in some ways there is but in other ways it seems like an illusion. Anyway, that's my rant for today and I remind myself that there are things I can do today. I can see a patch of blue sky thr my window.

 

Hugs to anyone who wants them

 

carolsav
Member

Re: Bone mets - please join in

Desi. I get you too...rant away for as long as you need to. Sorry you are feeling low and i wish there was more i cud to do to help.
X
bertie1
Member

Re: Bone mets - please join in

Morning everyone hope we're all ok ,not avery nice day here in S Wales raining an cold.I get what you mean by OH they are hard work sometimes but we wouldn't be without them.well busy day today Oh fixing creaky stairs before I have new carpet fitted and roast dinner to be cooked as have two sons and girlfriends for dinner today.
Take care all
Kaye xxx
Chocolates
Member

Re: Bone mets - please join in

Desi - I get you - I echo yiur thoughts exactly. Can't live with, can't live without. Hang on in there though - concentrate on yourself and your treatment. You can do this - just need to plan things for yourself and with your friends. Huge hugs lovely lady xxxx
Just out shopping - taking oh with me as back is painful - knew it last night when sitting on sofa awkwardly trying to do some work. It will be moan, moan, moan from him so will no doubt forget half the stuff I need. That's life though isn't it. Taking a deep breath and off I go.

Morning everyone - dull and miserable here. Hope everyone is ok xxxx
Desi-2
Member

Re: Bone mets - please join in

Sorry ignore me just needing to sound off xxx
Desi-2
Member

Re: Bone mets - please join in

Can't cope with him can't cope without him wouldn't be able to cope with my beloved dog on my own
Desi-2
Member

Re: Bone mets - please join in

Morning ladies hope your all having a good one. Feeling low today oh involved as per usual. Can't remeber last time I had a real good laugh xxx
JulieD
Community Champion

Re: Bone mets - please join in

I've been using the site on and off since my primary dx back in 1999, I have been more involved since my secondary dx in 2010 and though I do use other forums I feel a real fondness for BCC as it has been there for me through all my journey.

I have met and made some really great friends on these forums, specially this bone thread, it's always been a particularly supportive thread.

For all those new members posting or just reading II'm sorry you are here but glad you found us.

xx

carolsav
Member

Re: Bone mets - please join in

Liz thank you xxx
Desi-2
Member

Re: Bone mets - please join in

Just wanted to say a quick hello ladies and to our new ladies 🙋 ditto keeping on top of pain. I'm on slow release twice a day with paracetamol and ibuprofen regularly. Chocolates our oh's are spookily similar im just sitting waiting to see what state mine comes home from football in! Hope everyone's having nice weekend so far.
Tracy xxx
lizH
Member

Re: Bone mets - please join in

Hi carol, just wanted to send you a hug ....... It is such a wonderful site isn't it. I get so much comfort from you all. It must be hard with you husband dealing with it as well but as you say, on here you can get some help.

Hope you have a relaxing evening and to everyone else too.

Lots of love,

Liz xx

carolsav
Member

Re: Bone mets - please join in

Hi helen 12. I was diagnosed with bc 2004 then sbc in may this year so have just returned to the site for support and help. I have been on denosumab since may and it has worked wonders...onc said bones are healing well.
My hubby cant cope with my C as he also has cancer so i know i can come on here and be amongst friends who truly understans how i feel. So thanka to everyone here who reads and posts advice or just to say hello.
X
bertie1
Member

Re: Bone mets - please join in

Hi Helen I've been on denosumab for about 4 months don't know if it's working yet as I'm also on capecitibine and don't get scanned till after 6th cycle which will be after Xmas.It is quite a lonely place to be sometimes but everyone on here is so supportive.
Kaye xx
Helen_12
Member

Re: Bone mets - please join in

Thanks for sharing Nicky janette belinda and Helen ,yes it's so very true about not being able to offload on loved ones ,I find that pretty much have to stay upbeat in front of children and oh especially him as he can't cope if I'm feeling down he pretty much buries his head ,which I can understand .ive been on denosumab for 7 months and was wandering if any of you were on this treatment and if it has been having good results ? Thing with SBC is that so many people keep asking me if I'm all clear now as I look well and when I try to explain they look puzzled or rush off !! Quite a lonely place to be sometimes so glad that I can join in with some friendly ladies many thanks :-))
Helen xxx

belinda
Member

Re: Bone mets - please join in

Hi Helen and all, I was diagnosed with BC and bone mets in 2003 and started posting on the old BCC forums early 2004. Used to post often but not so much now, many more people are using the boards and I can't always keep up to date with everyone's news and treatments. X
rosie53
Member

Re: Bone mets - please join in

Hi Helen, i have been on the forum since April after my sbc dx. The ladies on here are kind, welcoming and knowledgeable. I would have lost without it soee days.
Hi to all my cyber buddies hope you have a lovely wkend hugs Janette x x
2catlady
Member

Re: Bone mets - please join in

Hi,helen12 ,I've been on this site for 16 months since I had double whammy diagnosis of primary and mets. Progression to liver and lungs in June.
We all get on well because we understand what having a SBC diagnosis is and that C is always there lurking in your mind. We understand when you have dark days too. We all try to get on with life the best we can,sometimes it's very had and this is where the lovely ladies on here are wonderful and can pick you up and hug you.
We will all offer advice,support and even have a laugh !! We all look forward to hearing from you.
Always feel free to post anything,no questions are trivial or daft. You are on a huge learning curve and all your new friends are here to help you.
Huge hugs,Helen xxxxxxxx
nicky08
Community Champion

Re: Bone mets - please join in

Hi Helen, another welcome from me. I'm on old timer on here having had bone mets since 2008 (with spread to liver last year) , primary in 2003. I have found that the secondaries part of the forum has a lot of ladies who stay on it after all this unfortunate state we are in means BC is now part of our lives. The primary ladies often use the forum for immediate support particularly whilst going through rigorous treatment but are then able to get on with their lives, hopefully not finding their way over to this the 'dark' side 😉 We do have a lot of knowledge between us which we share when it's the right thing we can help with, as long as giving support and no judgement, after all we're all in thus together. I'm glad you found us, even though the circumstances are never what we want and do ask any questions, someone is bound to be able to help. Also feel free to moan, rant, have a meltdown, it's tough out there and not everyone understands the pressure we're under and we often don't want to offload onto loved ones.
Nicky

Helen_12
Member

Re: Bone mets - please join in

Morning all ,really appreciate the welcome I've received you are an extremely friendly bunch with a lot of knowledge am trying to trawl through earlier posts !! Was just wandering how long you all have been on this site ,you all seem to know each other well .its great being able to speak to like minded people although not in situation any of us would choose . Hope everyone has a great weekend ,Helen xxx

2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies and our new friends that are sadly joining us .
Yes,it's week off yippeeeeeee! Hoping I'll feel better each day until next Friday lol.
But as long as it's working I don't mind.

Happy birthday for tomorrow Julie xxxx I hope you have something nice planned.

Chocolate,oh boy I'd make him suffer ,oh something noisy,smelly and outside should do the trick.

Helen12 ,yes,you must keep pain killer topped up and not just take them when you have pain as pain is easier to manage then. Your body does get used to painkillers and hopefully nausea will lessen. Everything makes me sick unfortunately .even when I was on tamoxifen and letrozole!!

How's every one else doing? I agree with Julie d and chocolate. Even if it's just a kiss or smilie face on a post it lets us know everyone is okay. I know sometimes if your feeling rough you don't feel like posting xxxxxx

Well it's very warm in NE ,shock!! So I better get some washing on grrrr.
See my sister today whose been off on a holiday before her chemo starts on the 10th so looking forward to that as I've missed her this week.
Well huge hugs lovely ladies,stay strong,Helen xxxxxxx
bertie1
Member

Re: Bone mets - please join in

Morning all hope we are all ok today.Sorry to see Helen 12 and liz have had to join us but you will get plenty of support and advice from all the ladies on here.I too have mets to spine ,ribs ,liver and chest nodes.I don't suffer with too much pain at the moment did have really bad pain in spine at one point so they gave me radiotherapy to that area and that seems to have done the trick.Hope your pain settles soon.hope all you other ladies are doing okay ,enjoy your weekend all.
Take care all
Kaye xxx
Chocolates
Member

Re: Bone mets - please join in

Morning ladies, sorry to have to see Helen12 and liz here but we welcome you with open arms and hopefully you'll find good support from us all. I can't really help with pain meds as so far - touch wood - I don't suffer too much but I hope you pain settles soon.
Julie I'm glad the port worked well - the soreness will be gone completely for next time so it should be even easier. I struggled with tummy issues from docetaxol and it took a while to settle after I'd finished. I hope everything settles this coming week and you can feel more 'normal' again. In the meantime nothing wrong with a few more PJ days!!!!
Helen, how are you - hopefully you are now into your week off and will quickly feel better. I like to think that the reason I feel so rough is because the tablets are working and the uggers obliterated. Kept me going during difficult times. Look forward to hearing from you when you're ready.
Bevlaar - morning to you - how are you doing? Mavis, Sheila hope you are both doing ok. Remember what Julie D said - we understand you can't post but just putting an x would let us know you are ok. When you're feeling ready we'd love to hear from you.
Carol, Janette, Lynn, faraway, Nicky, Porkie, Desi - hope you are ok. Faraway how are you doing - how are you getting on. Hopefully you are recovering well xxx

Just enjoying some peace and quiet downstairs before everyone else gets up. Oh went out last night. Rolled in very, very drunk about 1.30 - kitchen a mess, and the snoring - sorry girls if it woke you all up!! Just plotting what I'm going to make him do today now as punishment. I have several ideas already - hope he suffers!!!!
Have a good weekend everyone.
Huge hugs,
Hxxxxx
madge1
Member

Re: Bone mets - please join in

Morning ladies,
After having a pj week I finally got dressed to have my treatment of herceptin and pertuzumab yesterday!! Chocolates you were right it was so much easier with the portacath even though it was slightly sore still as only fitted on Monday !!! I was still at the chemo unit for 6hrs though and also started on exemestane 25mg daily, another pill to pop !!!! Every time I go there is something different!!! Mind you I am feeling better each day after my reaction to the docetaxol but still not right in the bowel dept.!!!! Lol !!!
Sending everyone a big hug, especially Helen, miss you when you don't post, but I know sometimes you just want to read and not post !!!! Like me ! I'm going to enjoy this weekend as it's my birthday tomorrow another scorpion !!!!! And nearly a year since my double whammy diagnosis, so much has happened in a year !!!
Love Julie
Xxx
Helen_12
Member

Re: Bone mets - please join in

Thanks Carol and Janette I haven't really needed to take regular pain relief before so now this flare up has happend it's really knocked me for six , as I've been pretty fortunate not to experience too much pain it's led me to a false sense of security ! It's very reassuring to be able to post here with you a who totally understand how vulnerable and worrying this illness makes us feel .Helen xxx

carolsav
Member

Re: Bone mets - please join in

Hi helen 12. I completely agree with helen and janette and i seem to be on same meds as helen even down to anti sickness meds. Also i made the mistake of thinking i was doing well to miss a dose...how wrong was i! As the ladies say you have to maintain pain relief to keep thinga stable. I personaly dont have a problem with top ups of oramorph. Its the mst ithink that cause feelungs of nausea but onc feels that as my body gets used to it i should feel less sickness.
I understand your worry over pain though. Each day seems to bring pain in new areas and its frightening. It was interesting to hear helen say that healing mets can cause pain and i didnt know that. Thank goodness we have this site for exchanging knowledge!
Carol x
rosie53
Member

Re: Bone mets - please join in

Hi Helen, your welcome to join us, sorry to hear of your increased pain, your right it does make your mind wonder about progression, i agree with Helen you need to get in touch with your onc/bcn and ask for a scan to put your mind at rest. I was dx with mets to my hip, ribs and spine in March and was in a lot of pain before starting my treatment plan, i am on tamoxifen, denosumab and zoladex injections, for pain i take naproxen 500mg morning and night and good old paracetamols in between, it is important to take pain meds regular to keep it at bay, i made the mistake at the begining of only taking them when i had pain, with disease you need keep on top of the pain.
Hope this help take care hugs Janette x
Helen_12
Member

Re: Bone mets - please join in

Thankyou Helen ,most helpful .ive been given oramorph does it make you feel bad ? I've not tried mine yet !and would love to hope that it maybe healing mets !! I'm seeing oncologist on Tuesday .having trouble posting ! Have to keep resetting password ,not sure how to keep logged on !thanks again for info xxxx

2catlady
Member

Re: Bone mets - please join in

Hi,Hellen,so sorry you are worrying about pain. Every time we get a pain we all worry it's progression. You need to ask for a scan as that's what will put your mind at rest. Pain does not mean progression as it can be healing mets.
My pain killers do make me feel sick and I take anti sickness. I try to not take them for this reason . Any of the "strong" ones can make you feel sick. I found tramadol the worst and won't take them. I have slow release morphine and oromorph liquid for top up or break through pain.i find the oromorph with the humble paracetamol a great combination as supposedly they work great together.
Hope you get some answers soon,huge hugs,Helen xxxxxxx
Helen_12
Member

Re: Bone mets - please join in

Hi ladies , do you mind if I join you I was dx in 2010 and secondaries in2012 have been stable for 18 months with arimodex and recently on denosumab for mets in spine and ribs .have been pretty lucky not too much pain up until recently.I am experiencing terrible pain in ribs back and pelvic region and worried may have progression , can I ask what sort of painkillers you ladies are on some have made me feel very nauseous thanks Helen xx