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Bone mets - please join in

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Re: Bone mets - please join in

Hello ladies
just sat up in bed this morning with my coffee reading your postings ladies ..my heart goes out to you both being in so much pain ...
It's hard to wake up, get up and deal with so much pain ..its a very cruel disease ..
I think from my experience ..this illness ebbs and flows ..some days no pain ..some days it really gets its own back !!
Hopefully ...let's think good things ...choc or McDonalds ..maybe ? Or a bit of online retail therapy ?
Sending loads of hugs xx💗💗
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Morning PMOL and Maldives, so sorry read your having a tough time. This disease that we have to live with is just soul destroying isn't it! PMOL, it brought tears to my eyes reading your post!
We all totally get where your coming from, all the "why me" "can't do this anymore" etc, sometimes when you get so far down its really hard to get back up. Pain is what really brings me down i had to come home from work last week as I was struggling (nothing so bad as yours though) and that has a knock on effect with my mood as it brings the reality of this disease back into play!
Well I you both start to feel a little better today, sending you both a huge cyber hug ((((()))))
Hugs Janette xxxxx
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Thank you... ❤️❤️
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Re: Bone mets - please join in

Hi Maldives and PMOL I'm sorry you have been in so much pain. Hope things are improving. It puts my own problems into perspective.

 

Hi Mrs Goggins I have sent you a personal message because we can't mention doctors' names on here.

love to all B xx

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Hi Maldives! 

I understand... had another muscle spasm last week after my first zomets, they said it was my tumors flaring and that it might caus this. Ended up with stronger painkillers but that can lead up to addiction so to stop taking them as soon as pain was under control.  They hadn't told me how to get off the pain killers from the first bout about z5wks ago! Anyway, decided to go cold turkey over the weekend and all I did was cry. Cry because of the **bleep** (excuse me!) situatuion, cry because I don't want to feel like my falling apart, cry because I  don't want to be ill, cry because I want to be ok to take our girls (11&10) to a surprise holiday in May half term and just cry because sometimes aI feel like I cannot go on.  This would happen at 4am as for some reason I'm waking up and at normal morning hours too....  the worse/best part wsa when my youngest came whilst I was bawling my eyes, gave me a hug and said that we'll get through this, just like we did last time... (not sure if there are any spelling mistakes as I'm crying as I type!!!)

i'm feeling a bit more normal now... so I understand the pits of being in a fiercely down spiral and then better... as I'm sure lots of other do too.

will pray that you don't have to have chemo and they will,find something else that could do the trick.

lots of hugs xxxxxx

 

ps. Have you guys been watching the Lethal weapon series? It's sad/dark humour involved but makes me lol. (Itv on the uk) xxxxxx any other series that you can recommend?

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Hi ladies,

not been on for a while, had a few problems recently. had radiotherapy on Friday as the base of my back was in two. I had a MRI scan on Tuesday which caused me so much pain in my back nothing could ease it. 

Have any of you ladies experienced this??? I have early on in my dx before the painkillers but the onc said it wouldnt cause pain???

Well it lead to radiotherapy as the pain was uncontrolable. Im on my third round of cape so mouth is very sore and had my zometa earlier in the week which gave me flu like symptoms. Along with sickness from radiotherapy I was in a bit of a state to say the least.

On the good side I woke up this morning and all was well. Felt like a human being again.

Its mad how one minute you feel like your on deaths door and the next your like a spring chicken???

I've got my scans at the end of the month bt onc is already talking about IV chemo, a bit nerve wracking.

Well no point in worrying it wont change the outcome.

I hope all you ladies are well and coping with various treatments your on. sending one big hug out to you all.

sue xx

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Hi, I am under Torbay and just received a letter postponing my next onc appt by a month. Who has/is leaving? I guess I am just generally glad to be seen xxxx

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Oh Bon
That's terrible ..shows how the nhs is sinking fast with shortages of oncologists ..but I suppose its not a field that is popular with newer qualified doctors ...
I assume this is torbay hospital you are under ..when I was last in clinic in Exeter it seemed manic and staff were almost running around from one patient to another.
Hugs
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Got a letter from my onc today. Had written to him because of my appointment being postponed for 7 weeks and there being things I wanted to discuss with him. Turns out that he thinks the onc i should have seen has retired and another one has left. Neither are being replaced so he says the clinics are going to be very busy. Well, I read the papers so no surprises there. At least he is going to arrange a scan.

love to all B xx

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FF
Just watching the news ..some parts of US on the east coast have really caught storm Stella ....ugh hope it goes soon ...it's not bad here ..been out today without my coat on.
Well hope u have enough snow to build a snowman and send us a photo .
Hugs xxx
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So the snow storm was a bust! We had about an inch of snow. Then warm air above turned it to sleet. We have about 8 Inches of sleet piled up. I've never seen this much sleet come down.Thankful it wasn't freezing rain. That would have stuck to the trees. This stuff is like a snow cone!

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Carolyn and Natalie, That's how I was on the few warm days we had. Washed everything in site!

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It got quite hot here today and was able to sit out on decking having coffee.I have also done loads of washing and even washed throws and mattress covers etc.

Don't envy you ff with snow ..ugh ..hope u have those safety chains u can put on your shoes so u don't slip.

Hubby has footy on TV  as he's a man united fan ...boring ! Just off to watch broad church in my bedroom like a naughty child .

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Oohh FF, I don't envy you that! I hate the "white stuff"! It should only be seen on a Christmas card 😀 seriously though, please take care, don't need any broken bones!
It's been positively spring like here today, got loads of washing dry on the washing line.....love it! I go round the house hunting for washing when the sun is shining hubby says I'm crackers!
Hugs Janette xxx
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We are prepared and waiting for Winter Storm Stella! They increased the amounts and we are expecting 18 to 24 inches in our area. Supposed to be a heavy wet snow. Generator is ready!!! FF

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Hello ladies
Hope u have all had a nice weekend and are relaxing like me watching Crufts ...phew I love them all and quite an assortment of dogs as finalists .
We do doggy day care for both our son's dogs so don't need one of our own.
Hugs xxxx
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Hi Funnyface.  Sounds like you and the weather have a lot in common right now. Spring is trying here but can only manage the odd day. I have been snuggling down cosily in bed only to wake up later throwing off the duvet for the last 25 to 30 years but have only had BC for 8 years.
love to all     B xx

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Crazy weather continues here! February had more warm days tha I've ever seen. March is also strange. We are having February weather. Thursday was in the mid 60's. Friday low 30'sand we got 3 inches of snow.Supposed to be cold Saturday and Sunday. Then starting Monday night and all day Tuesday we are getting a major snow storm. Charts are already coming out! Our area is in a section they have labeled crippling!! Never saw that word used before. All I can say is Oh wonderful!!! FF

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So glad i'm not the only one!!!  mine is more being constantly hot even when others are freezing. I still maintain that its the chemo that toatally wipes out or internal regultion system. I only have a 4 tog quilt and that is on and off all night!!.x

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Pippin, My body temperature works light someone keeps turning a switch! Hot then Cold, Cold then Hot 24/ 7!  FF

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Hi pippin
I don't know whether you are on chemo or hormone but the hot and cold thingy is very common ...the important thing is LAYERS ...for clothes and bedding !! I have a lightweight duvet and a throw ..during the night if I'm too hot ...my feet are in and out like I'm doing the okey cokey with the duvet ..window is open/shut and I huff and puff or shiver ..both are extremes !! Poor hubby shivers as he feels the cold !!
I have sort of got used to it now ...its funny when I'm hot ..I don't sweat like u would normally do ..my head just gets hot and my hairs goes more curly !!
Hugs xxx
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Morning Ann, I'm also not on chemo "only letrozole and denosumab" I am constantly tired regardless of if I get a good night's sleep or not.....which is more often not! Denosumab can make you tired as can hormone treatment also don't forget this illness in its self is tiring too! I'm 49 and I quite honestly feel 109 some days! 😨 I'm finding that I am having to drag myself off the sofa to do the mundane jobs house work etc, this does get me down as I've always been the "always on the go" type of person!
It also gorgeous here yesterday too, lovely to have washing blowing on the line, I'm hoping now with spring hot on our heels it will kick start my energy levels!
Hugs Janette xxx
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Good morning Anne
Welcome to the zzz club ..like u I only take letrozole ..no denosumab as teeth probs and no chemo but I'm honestly tired from the minute I get up to bedtime ...one thing also ..I never nap during the day ..somehow that seems like giving in!!?
Most possible ..the Mets are zapping our energy levels somehow but spring is here so maybe some natural vit d will make us like little Duracell bunnies again !!
Hugs 🐰🐰🐰
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Reading through the recent postings regarding tiredness, I can totally relate to this, although at the moment I am sleeping reasonably well during the night, apart from a couple of trips to the loo. So why I ask myself do I feel so tired during the day and have to motivate myself to get on with day to day tasks. By early afternoon I am yawning away but not able to sleep. I positively look forward to when I can crawl back into my bed around 10ish but sometimes earlier.

I am on 4 weekly Denosumab and Tamoxifen so can't blame it on chemo. that some of you are having to deal with. My husband who is 7 years older has got more energy than me which is very frustrating, although he is understanding, I'm sure he doesn't fully appreciate the tiredness or general fatigue that I feel.

Well the sun was glorious yesterday and I manage a few hours tidying the garden which was therapeutic, although I ache a bit this morning, so I must learn to pace myself in future. Ann xx

 

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Hi all

Trivial, I know for a Friday night, but, does anyone else ever feel too hot and too cold both at the same time? Weird. Is it just me? (The temp thing I mean - cos already know I'm weird and unique). Even with stage 4 BC and limping arround on crutches it's the little things that bug you. Central heating on, off, on, - discarded cardigans everywhere except when you suddenly want one, ice cream and ice-lollies' store depleted.

No sign of tiredness yet but then did have two naps during the day.  

Panicked a bit last Friday, could hardly walk at all so got X-rayed and reviewed by onc. It was Friday afternoon and everyone clearly wanted to get home, my pathetic struggles at walking quickly led everyone to put me in a wheel chair and it seemed they pushed me round so fast I had to cling on and have felt less fearful at the fun fair. All very efficient though like when you go to the supermarket just before closing

and you get served super-quick.

Pippin

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Kirky, fantastic news....not only stable but shrinkage as well...you lucky lucky girl, lets hope it continues that way.

I have noticed lately that i too cant seem to stay awake which worries me because i remember my mum towards the end just wanting to sleep all the time. I seem to go through phases when i cant sleep at night at all, then i sleep fitfully then i seem to sleep well but am still kn****ered. I have never really slept in the day but find i can drop off at any time. I am hoping that as the better weather comes i will feel like doing more and the tiredness will go....just wish it would hurry up!!. x

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Hello FF
Welcome to my normal world of activity at night ..but the last two weeks things have changed and I am sleeping for England..it's nice but worrying at the same time.
My best sleep is 6am to 9am but I'm lucky I'm retired and don't have to rush in the morning's !!
Try to do the A to Z of something in your head ..names, tv programmes or cars ...I usually fall asleep through boredom !!!!Ha ha.
It's gorgeous spring like weather here today ..washing machine being kept busy and washing hanging outdoors !! Sons dog laying out in sunshine topping up his tan too !!
Hugs Carolyn xxxx
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Hoot, hoot to my night owl friends! Why oh why can I not hold my head up when I'm down stairs watching TV. Get up go to bed and play the ho hum when am I going to go to sleep game! Then just as I'm getting sleepy I have to go to the loo! Now, time to try sleeping again. Finally asleep but never sleep more than 4 hours at the most if I'm lucky. Usually more like 2 hours! Ok wide awake I might as well do my morning exercises. Hubby wakes up to use loo. He wants to know wth am I doing exercising at 2 in the morning? Thinks I've lost it! Time to try and sleep again. Can't tell you how many times a night I wake up and hit the snooze button on the radio to play another hour. Hubby says hat do you do turn the radio on all night it never shuts off. I said no it's just me waking up and turning it back on.Alarm goes off for work! I'm ready to sleep, now! Grrrrrrr!  Hope you all sleep tight tonight! FF

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Kirby, Enjoy planning a nice get away! Yahoo on Stable Mable! She is awesome! FF

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Janette, My doctor bag has a little bottle in it for medicinal purpose! Possibly a heating pad too! Feel better soon! FF

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The bone mets thread,

it makes me shake ---

i have to laugh, I have to quake,

 

crammed with 'knickers', jokes and 'chocs'

the conversation always rocks...

 

Barton comes up with the cuddles - 

whilst Carolyn has us all in 'puddles' xx

 

 

Anon

 

 

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Great news Kirky, get that holiday booked!
Hugs Janette xxx
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Kirky
Whoop whoop for great scan results ...hopefully you will find some energy now to celebrate !! 👍👍
Jeanette
Hoping your aches and pains are a bit better with some rest .
Carolyn xxx
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Sorry to read about your extra pain, Janette - Nurse Barton's second opinion is the same as Nurse Carolyn's! Chocolate and lots of rest!

 

Hugs. Barton.x

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Oh well done, Kirky! Excellent news - it cheers us all up, not just you! At least you can relax a bit now for a while! It's the most worrying thing, isn't it, waiting for the results! Anyway, long may it continue.

 

Hugs. Barton.x

 

Ps - even shrinkage! Brilliant!

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Well, all good on my scan thank goodness, mainly stable Mabel with a few bits of shrinkage. PJs back on and a long snooze after a few wakeful nights worrying. Then round 14 of Cape! Going to book my hols as well now I've got my results.

Hope everyone is OK and lots of hugs to anyone waiting test results (and everyone else too of course).

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Jeanette
Nurse Carolyn recommends a comfy place on sofa in joggers ( tight jeans hurt more) a large bar of choc and a large mug of tea and a chic flick DVD or stupid daytime tv and don't feel guilty about the dust, pile of ironing or dishes in the sink !!!
Sending hugs xx🍫👍☕🍨
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Well the painful hip and leg has got the better of me today, just had to come home from work, really didn't have the patience to be in there today!.....hate this flaming disease!
Hugs Janette xxx
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Hello kirky
You have a good excuse for being tired ..you are a " cape crusader" and its a big side effect of it ! Just let your body tell you when to rest ..it knows best !!
Jeanette and I are only letrozole girls and have no excuse !! But Jeanette you might be right as I haven't had denosumab for eight weeks because of my teeth problems but I'm not sure whether I want it until I'm sure the jaw thing isn't my problem ..I want to see Maxx fax dentist first before I go back on it
Xxxxxx.
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Hi Pippin,

Yes it's lonely in the middle of the night and things keep going round and round and getting worse. Advice seems to be not to lie there fretting but to do something like reading. But I usually feel too tired to do this. I find listening to music can be comforting and you don't need to turn the light on. I usually crash out at bedtime but it doesn't last long. Tonight think of all the people who will be sharing your wakefulness. We will be there with you. Hugs B xx

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Hi all so glad it's not just me. I have been having long afternoon naps but feeling no better for them. ONC just keeps saying excercise which is easy for her to say. Piling on the pounds as the only time I seem to go out is to meet up for lunch or coffee and cake!!

Get my latest scan results this morning and am absolutely bricking it - convinced myself the cape has stopped working which has certainly added to my sleepless or nightmare filled nights and lazy days.

Ah well, best get out of these pjs and make a shape.

Paula

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Morning Carolyn, it's horrible isn't it!
I've also been getting a lot more pain /achey in my hip and femur, I'm wondering if it's to do with the fact my onc has changed me to 8 weekly denosumab instead of 4 weekly?? If this continues I'm going to ask to be put back to 4 weekly when I next see her in May! This pain is getting me down now and also that's contributing to my sleepless nights as I cannot get comfortable.
Hugs Janette xxx
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Hello Jeanette
Snap ..Im the same with tiredness too ..this last few weeks on average I go to bed at ten ish and don't get up until ten ish the next day ..that's twelve hours !!
Sometimes I think I have been abducted by aliens during the night and been partying ..hence the tiredness !!
Hugs xxx
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Hi Pippin, I hope you managed to doze off at point.
I'm also really struggling with tiredness at the moment, constantly sooo tired, how can you be so tired then not be able to sleep???? Last night I went to bed at around 8.30 because I felt so rubbish and I actually did sleep all night but this i feel awful, still just as tired with a really heavy head.....think I've had too much sleep feel about 90.....You can't win!
Hugs Janette xxx
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Hi everyone

Can't seem to get through most days without a long nap, then not tired at bedtime hence the middle of the night post. Can't blame steroids or painkillers as not taking any. It's lonely here!

Pippin

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Hi ladies, I found my tumor while in Disney World on vacation. My breast started to leak blood and I was in the shower and found the lump. I was there with my two youngest at the time. Hubby was in the keys with oldest son and boy scouts sailing. They had dropped me off and were coming back for me. I got home went through all my treatment and surgery. No nodes involved! Oncologist said I didn't need radiation or tamoxifen. I didn't know much about BC and so I figured oncologist knew what he was doing. Fast forward 10 years and I'm coughing up phlegm like crazy, so bad I'm vomiting from it. Cancr set up camp in lungs. I asked oncologist what my original breast cancer was? His reply was he didn't know it wasn't in my notes he would have to research it. Next visit he tells me I was ER +! I said shouldn't I have been in tamoxifen? His reply was that protocol at the time of my cancer and my age said  you could give it or not give it, but  at the time my mets were discovered if I had presented with primary he would have given it to me. I then went to surgeon for port placement and told her the story. She was furious! She said BS! She hit her fist on the table! She said I should have been given it and at the very least I should have been given the choice. Then she said, but no use in crying over spilt milk we can't change it now! FF

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Hello lyndyloo
Thanks for posting ..we all have the same sort of stories to tell at being overlooked.
I have always been a person that if I get pain ..take paracetamol ...if I bleed ..stick a plaster on it !! I put my hip pain down to old age for a long time !! Then doc dx sciatica and arthritus !! It was ages before I got a scan and the rest is history ...looking back its important to take things more seriously but then we would be at doc's everyday I suppose.
Hugs xxxxx
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Hi Moijhan and everyone. I still get annoyed with myself even though it is now nearly 8 years ago since diagnosis. For all the newbies this is what happened to me. Had the normal 3 yearly mammogram in Jan 2008 came back as normal. Like you I have still got that letter. Went to GP 3 weeks later with intention in side of breast.. GP would not examine me. I left it at that thinking I must be OK. Went back again July 2009 to GP by that time it was a lady doctor I saw who referred me to see a consultant. Had a mastectomy in the September then found out mine was lobular which as you say does not show up on mammograms in the early stages. Sent for bone and CT scan came back had bone mets. Had treament chemo etc. Sorry reply has been so long. Just thought I would give hope to everyone that I am still here. Linda
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Yes, everyone, like Lucy, I ended up changing hospitals after my bc was missed, the year before I found a huge lump! 

 

I had gone to them with a crease in my boob which I knew wasnt normal. However, I. Learned later that my bc was invisible on mammos...lobular is quite hard to find. The reason I changed was because when I decided to ask my cons. Why my  bc had been missed the previous year....he lost his temper with me!......

 

this was about 17 years ago........by the time I found the large lump....most of my armpit lymph nodes were cancerous and it had spread outside them into the armpit.

 

like you ladies,I was angry with myself for not going back, or checking more...I was just glad to be sent the letter that I still have ' dear ms x you will be pleased. To hear that no cancer was found, etc etc'

 

we have to go forward, no choice, otherwise we waste the time we do have. Not one second of agonising or self punishment will change the past.  I have been where you are...its tough,xxx

 

but make the very best of today

 

today  is really all that any one of us have. Xxx

 

hugs, Moijanxxx💚💚💚

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Hello Doodles
I don't post very often but reading yours i felt i should .
I went through a very angry time after I had been diagnosed.
I was referred to my local hospital after finding a lump . I had the usual mammogram ultra sound etc . 4 days later diagnosed with "early stage breast cancer " or as they said . I was told by my Consultant that I was young fit and Healthy and he didn't see any reason why I wouldn't get through this ! He said it was curable and he's was there to help me ! I also was told it hasn't gone to my lymph nodes .
Everything seemed really positive . Secondary breast cancer never crossed my mind . I had my operation then after finding it in the lymph nodes I had a body scan and ct scan only to find I now had it i my liver and femur !
I too went through a very difficult time with the professionals involved ! Whilst I appreciated iim
Sure it wasn't intentional and he probably didn't know . I felt very let down and very angry with everything.This took a long time to get over . So much so that I had a second opinion somewhere else and decided to transfer my care there .
So I empathise with how you are feeling x
I