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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

I.just loved the royal wedding yesterday ..breath of fresh air ..and a boost to UK economy with all those designer outfits, hats and shoes!
Victoria Beckham looked miserable and drab but George Clooney wife stole the style stake for her beautiful outfit. Queen looked lovely in lime green too.

I'm proud to be British when I see how the wedding was staged so beautiful .
Anne30
Member

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Anne30
Member

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How are you getting on butterflyflyfree? Hope you are okay and enjoyed the Royal Wedding and maybe some sunshine.
Anne30
Member

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Yes. Lovely weather and a stunning bride. Loved the dress. So elegant
funnyface
Member

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Meghan looked stunning! Elegant gown and gorgeous vail. The groom looked handsome. They both were shining with love. Wish I could have tasted cake. FF

Moijan
Member

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We have a moth infestation...so creepy, keep finding pure all over things and even under my quilt!

 

so I think stink bugs and huge ferocious bees would really creep me outxxx

Pippin
Member

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Hey Carolyn

He was only looking for the thread on the web and spied you!

Pippin

Carolyn52
Member

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Ff
Stink bugs sound awful ...ugh. it's funny once u get it in your head ..it makes sleeping difficult.
We have these rough ugly bees that keep coming in our lounge. .they are not honey bees but have a large stinger. Hubby thinks he's killed about 2 a day for the last month as they won't go if u open the window and are quite aggressive ..think they must have come from Europe or something. ..never seen them before.
funnyface
Member

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Carolyn, That's what I've heard too! We also have these bugs called stink bugs. You can smell them when you squish them. They have a shield which makes them hard to squish. They came from one of the Asian countries and are spreading over here. If you have a couple of them in one spot you can smell them too. We drown them in a bottle of soapy water. Before I get in bed I do a search. Ceiling, walls, windows, shake my sheets, etc. Especially the ceiling. I don't want one to lose its grip and land on me.  We usually get one stink bug a day. They say an exterminator can't do much for them. 

Carolyn52
Member

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Got into bed last night hoping he didn't have any brothers or sister's seeking revenge but took a few extra tools to bed just in case ....a bowl to cover one with and a fly swat !! I am not that scared but hate the thought of them crawling on my pillow. Didn't I read somewhere once that everyone swallows a few whilst sleeping during their lifetime ! 🐜🐜🐜🐜🐜
bonariensis
Member

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My daughter can't stand spiders. She didn't get it from me, and it was apparent from a very early age. it seems to be a deeply embedded primal instinct.

tatyana
Member

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Carolyn, it gave me the creeps just reading your story! If they have a picture of a spider in the newspaper, I have to turn over the page and not read it!
nicky08
Community Champion

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AAaaargh. I would not have been able to get back to sleep unless I had done the same thing Carolyn. I really hate spiders and I can feel awful for days if I see a big one. I even hate the emojis of them and keep meaning to write to the developers to take them off the animals page!

Hipe you got back to sleep and you have seen the last of them.

Nicky x

Carolyn52
Member

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Oh ladies what a shock ..woke up 2ish for my coffee /bicky and there's a huge hairy spider on my pillow . No time to scream ..hit him with my kindle but he ran off ...So pillows,sheets removed and found the little blighter licking his wounds ..hit him with my slipper ..still refused to give in so sprayed him with fly spray that seem to give him energy to recover ....well was a bit short of lethal weapons for hunting spiders so in the end grabbed him in a baby wipe and flushed him down loo. Enjoy your swim mate .....

 

Carolyn52
Member

Re: Bone mets - please join in

Oh ladies what a shock ..woke up 2ish for my coffee /bicky and there's a huge hairy spider on my pillow . No time to scream ..hit him with my kindle but he ran off ...So pillows,sheets removed and found the little blighter licking his wounds ..hit him with my slipper ..still refused to give in so sprayed him with fly spray that seem to give him energy to recover ....well was a bit short of lethal weapons for hunting spiders so in the end grabbed him in a baby wipe and flushed him down loo. Enjoy your swim mate .....

🐜

nicky08
Community Champion

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A beautiful day in Hampshire as well. I love days like this with a bit of a breeze and clear blue skies. Washing on the line for me as well. The good thing also is that we don’t get the hit and humid nights when it’s this breezy so hopefully get a good nights sleep.

Nicky x

redridinghood
Member

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i agree Carolyn! What a lovely day. This isn't very relevant to the thread but I have my washing out, blowing on the line in the sunshine. Happy day! I haven't discarded my vest yet because I am a cautious person, but the week looks good.

 

Hoping everyone out there is having a good day! Lots of vit D available for free!

 

mo          xx

Carolyn52
Member

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Hello ladies

All quiet here so guess you all enjoyed the lovely sunny weekend ...
Summer is such a nice time of the year ...got my flip flops out and summer things now ..that will jinx the weather. .all chunky jumpers binned. ....

Butterflyflyfree
Member

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Thank you Nicky and Anne. It’s good to know there are treatments that are working. Gives us all hope. Xx

Anne30
Member

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I’m doing my best! I’ve certainly struggled to come to terms with the secondary diagnosis. It seems that everyone I meet has had no spread and is over it all. It’s so good to connect with people who understand. It’s also reassuring to hear that sometimes treatment can work well! Thank you for the encouragement
nicky08
Community Champion

Re: Bone mets - please join in

Hi butterfly

When I was first diagnosed with secondaries (in 2008) I had chemo as I had a local recurrence. After that I had anastrozole which worked well for nearly 5 years so it is possible to live fairly normally with little hospital intervention and few side effects. I have since had other chemos as well as other hormone treatments  so although it might seem strange that a tiny pill can keep secondaries at bay I can vouch for the fact that they can! And that was before all the additional drugs which work alongside them have some along, such as palbociclib which increase the period of effectiveness of the hormonal treatments.

Giod luck

Nicky x

ps Anne - it’s good to see you joining in the forum and offering advice, you seem to be in a better place now which I hope you are. This secondary business is the pits but by using this forum you know you’re not in it alone.

Anne30
Member

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Well done you. In my hopeful times I see that in some cases secondaries can be kept relatively quiet for some time. There are ladies here who will confirm that. I didn’t have any treatment for primary as the secondary was found in my bones. On Ibrance and Aristozole plus bone injections. Seeing family today and learning to see beauty again. Hope your treatment is bearable and successsul. I think there’s quite a few they can try!
Butterflyflyfree
Member

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Hi Anne, having a good day today. Was signed off from consultant radiographer yesterday, which has made me realise that all of the primary treatment has now finished. Which is good. Now the emphasis is on keeping any rogue escapee cancer cells away, for as long as I can, by continuing with Herceptin, Pertuzumab and Letrozole. 

 

Walking in the woods seeing the fading bluebells, and returning across a field with cowslips was my beauty for the day. Shame it’s turned nippy again though, have had to dig my hats back out again. Still not got enough hair to keep my head warm! 

 

Have a a lovely weekend. Xx

funnyface
Member

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Ramade, Oh, I've seen them flip out from UTI's! She is still in the hospital. No one is saying anything. 

 

Keep plugging through! It's such a pain needing the IV chemo and having to go sit there! I tried not to whine about it. My brother was on dialysis and it took 6 hours 3 x a week. Very daunting.

Anne30
Member

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How are you getting on butterfly? Hope you are seeing some daily beauty in life. My mother sent me a picture of some ducklings today. So sweet
Anne30
Member

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I hope it’s working.
ramade
Member

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hi ff, just read your post, it seems from my experience with dementia patients they flip out when they have a uti, i don't know why though.

haven't been posting recently because i am still going through 6 months of iv chemo (third time). half way now, just had an mri last week to see if it's working, waiting for results next week.

lots of love and hugs

ramade

Anne30
Member

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It is very time consuming dealing with all the appointments and things. It can all get a bit frustrating. Totally understandable. But a holiday sounds good!
Carolyn52
Member

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Hello Ruth

Its good to let off steam and this is the place to do it as we totally understand ..it's bad enough dealing with this disease but chasing and having to keep things on par is something we shouldn't have to do.

I'm chasing scan results and getting no where ..I do not have a bcn nurse!

Hugs xxx
windflower
Member

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Hi everyone,

 

I very rarely post on here, but always read what others have said.

 

Going back to dentistry, I have been led a bit of a merry dance lately.  I was supposed to have a crown removed from a back molar, the underlying tooth filled and then a new crown fitted.  The first part was to be done yesterday.  It was quite difficult to arrange this as the dentist wanted confirmation from my consultant that it would be OK to do it, because of the danger of osteonecrosis.  My consultant is presently on maternity leave so the secretary asked another one who said it would be OK but it must have it no less than four weeks after my Denosumab injection and no less than four weeks before the next one.  I therefore booked an appointment with the receptionist for yesterday and cancelled my injection for that day.  However, after waiting about 20 minutes after the appointed time in the dentist's, I was informed they couldn't do it as the receptionist had only booked me in for 30 minutes and it would take 75 minutes!  I was really fed up.  You would have thought someone would have told her how long it would take.  The dentist also said that asking the consultant had only been a precautionary measure, as the jaw bone wouldn't be involved.  Fillings are OK (which I have had before whilst on Denosumab) but extractions or implants are not.

I made another appointment for 21st May and then had to phone the Macmillan unit to explain what had happened.  The lovely nurse there decided I should come for my appointment for bloods and to see the doctor on 31st May and then he could say when I could have my next injection.  

This is really annoying as we are trying to book a holiday some time in June that will not clash with any of my appointments.

I am off for a CT scan tomorrow.  I had to press for it as I hadn't had one for twelve months and haven't got any noticeable symptoms.  I don't think I have ever had any TM tests, just the usual blood tests.  

Anyway, I just wanted to let off steam and hope I haven't bored anyone!

Ruth (Windflower)

Anne30
Member

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How are you getting on? Hope the treatment isn’t too awful and you are coping
funnyface
Member

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Carolyn, My one heart drug is on the medium reaction list. I have been feeling lightheaded since I started it. I've slowly been weaning myself from it. I'm down to 1/2 pill every other day. I was going to call my cardiologist about the dizziness. Now, I need to call bc it's on the list. Can cause face to swell, legs etc.  FF

Carolyn52
Member

Re: Bone mets - please join in

Hello ladies

Just a little heads up ..last week I was on anti biotics ..they didn't work and I felt really sicky etc.
If u Google the drugs u are taking and then put in "interaction ." .it will list all the things u shouldn't take.

My anti biotics were listed as a no no for me on my medication !!

Always worth checking when we are already dealing with side effects .
Hugs xx🌞
Anne30
Member

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Thank you for your message. It’s very hard to accept but my oncologist says it’s actually not that uncommon. Hope your treatment is going well.
Butterflyflyfree
Member

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Hi Anne just wanted to say you’re not alone, my secondary was picked up on a repeat ct scan but have been told it was there at the outset. It has taken me 6 months to accept the seriousness of the diagnosis but am beginning to come to terms with it now. 

I’ve heard that only 5% of secondaries at there at the outset so we’re in a very select group! 

 

Good luck with your treatment. I have had chemo, surgery and radiotherapy and am hoping I can continue with Herceptin and Pertuzumab for as long as my scans are clear (I’m HER2+). I’ll get Zometa every 6m for 2 years too. 

 

Hope everyone one has enjoyed the beautiful weather this weekend. Xx

Kate21
Member

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Hi Anne, I think you’re doing really well! I know you’ve had a very difficult time this past few weeks but hopefully the news that your lump is smaller and this glorious weather (think of all that vitamin d!) is making you feel more positive? Seeds and turmeric are great, I know not everyone likes walnuts but they are very good to include for breast cancer too. Enjoy your book! Kate x

Anne30
Member

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That’s encouraging. Well done you! I had secondaries from the start and feel really embarrassed about it! It feels really unusual. I am enjoying the sunshine today and reading my book. I’m also eating seeds and putting turmeric in my coffee! Several people have urged me to do something positive.
tatyana
Member

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Hi Anne, just wanted to say, I'm now 1 yr on from diagnosis of recurrence, and 4 months on from secondary diagnosis, and trust me, I'm still finding it hard! But at the same time I'm enjoying life. A lot. It's still early days for you, you still have to get used to this whole rollercoaster. Sometimes it's great to do stuff that takes your mind off it, other times you just need to look after yourself and give yourself time to let those emotions settle down. Be kind to yourself and enjoy the sunshine!
Anne30
Member

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You shouldn’t keep your mind off you you should be proud of what you do. I am doing my best but am still finding it hard.
funnyface
Member

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Anne30, It's my way of coping! Keeps my mind off of me! It makes you feel good to be doing good. You are doing better! I see it in your messages! It really does take time to get your act together. This diagnosis is a big slap in the face. FF

Anne30
Member

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I can’t believe you are volunteering and helping others. You make me feel very ashamed. I have just been feeling very sorry for myself. You really are impressive
funnyface
Member

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Thanks ladies! I like working with the seniors. My son works with seniors too. He is the director of a non-profit senior center. It is a place where seniors go to meet up with their friends get a hot meal and join activities. Hubby and I volunteer there sometimes. 

 

Baseball team lost, but had a good time. There was fireworks and a small concert by a local group. Ran into a few people we knew. 

 

Hope you all had a relaxing weekend!

rosie53
Member

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Hats off to you FF, I think you are amazing!
Hugs Janette xx
tatyana
Member

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FF, your post really struck a chord with me, because I have two elderly and infirm parents who are now living in a care home but until a few weeks ago were still living in their own house and just about barely managing to cope, purely because of the loving help and support they were receiving from caregivers like you. I can't tell you how much it meant to them to be able to remain in their own home as long as possible, and how many times the carers saved the day by spotting a problem early and/or picking up the pieces after a crisis.
So my heart goes out to you with the most sincere thanks for what you are doing. To do it when you have such health issues of your own is just amazing. My father also has a kind of dementia that can cause fits of aggression, so I know how that goes, too. Sending you lots of hugs. Enjoy the game- and the not cooking dinner!
bonariensis
Member

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Hi FF

You're amazing, an inspiration to us all. Your recent experiences must have been very upsetting. I hope your new clients will be less traumatic to look after. They are lucky that it's you they've got looking after them.

love Bon x

Anne30
Member

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I agree. So impressive that you are looking after people. I’ve been very selfish recently.
Moijan
Member

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Hi FF, what an amazing lady you are doing caring......quite hard work, but well appreciated I’m sure. And that lady who’d had a stroke m|ight Have died if you hadn’t found herxx

 

 

Yes, it’s a bit scary being attacked by someone too...xx

 

enjoy the baseball game FF

 

love and hugs

 

Mx

funnyface
Member

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Last two days here were stinking hot! Almost turned on the air conditioner. We just shut off the heat last weekend. I sure could enjoy a few days of not having to pay for heat or air conditioning.Today is supposed to be beautiful. I have had a few days off of work and accomplished nothing. I just sat around and enjoyed it and kept looking at all the things I need to do. I just couldn't get motivated. I promised myself I would get busy again today! It's almost 10 AM  so I better get started. Leaving for a baseball game around 4 so I don't have to cook dinner! YES!! 

 

I've had a rough time at work the last couple weeks.I'm doing care giving. A few weeks ago I went to my ladies apartment and the door was locked and she didn't answer the phone. Her apartment is in a complex for seniors, so I had to get maintenance to let me in with a master key.She was alive but had a stroke. They gave me a new lady and I've been going there for a couple weeks. The company I work for sent me to another lady in a different facility. I went to take her to her room and when we got there she flipped out. She pulled my hair, twisted my fingers, and rammed me with her wheel chair. She is normally this sweet thing. They think she she has the worse kind of dementia. It causes hallucinations and aggression. She was hallucinating. She thought a freighter was hitting the building. They are hoping to have another client for me by Wednesday. I think my lack of motivation this week was due to all this upsetting me. Life is so scary. FF

Moijan
Member

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Carolyn...I totally agree with your statement about us being the forgotten ladies...especially now that all the new drugs seem to be targeting primary bc.

 

im praying that the research discovery Kate21 mentioned a few months back gets a move on..the substance that they think drives metastatic growth.....hopefully that will be trialled ASAP...and we can all volunteer.to take the antidote/drug which removes the substance from our bodies.

 

much love.......oh and I’m one of the lucky ones who does have a specialist nurse for mets...she is actually sponsored by Mc Millar, so hopefully al of us will have one soon.

 

xx Moijan

tatyana
Member

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Yup, first wash hung out and almost dry already! I think I can hear the sound of barbecues being resurrected and scrubbed down... Now, where's the sunscreen?