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Bone mets - please join in

Community Champion

Re: Bone mets - please join in

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

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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

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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

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Re: Bone mets - please join in

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?
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Re: Bone mets - please join in

Hello ladies

Bet there isn't a washing machine in the UK that isn't in use today !!! Mine is on its 2nd run already.

Hope everyone is enjoying the sunshine ..it does help the achy bones! !

☺☺☺☺☺
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Thank you!
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Re: Bone mets - please join in

As I’ve said before Anne I’m sure you wouldn’t regret it. PB is an amazing place and you do feel like you’ve gone on a little break! You’re not pressurised to do anything you don’t want to do but, that said, I’m sure that won’t arise, and you’ll be with people who understand what you’re going through. You would never think it was a charity either, just wish I was closer to Bristol as they have many things going on daily. Enjoy your weekend away, Kxx

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That’s a good idea. I’ll have a look on the website. We’ve booked a weekend away as a family and I’m really looking forward to it. Hope everyone who has the sunshine and the Bank Holiday enjoys it x
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Let’s all go to Bristol !!
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Just view it as a holiday - that's what I did :-)

 

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That’s really bad and upsetting. We all deserve support and advice. I wish I lived nearer Bristol!
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When I had my primary bc ..I literally fell over bcn everytime I went to oncology but no signs of any secondary bc nurse at all now.
It would be so nice to have that support but my oncologist secretary is very good.
I understand that more time and finances are now available for primary bc to avoid reoccurrence but we do seem to be the forgotten ladies at times.
Xx
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Goodness I am lucky. My hospital is NHS and we have two secondary breast nurses. You can leave them a message and they call back the same day. One of them doesn't like me very much as I'm a bit anxious and needy but she's always really helpful. I also find 'phoning MacMillan really helpful. They are really patient. We all need support! At least we are going to get some lovely sunshine this weekend x

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A breast care nurse at my hospital actually said to me they didn’t really know what to do with secondary patients and we tend to fall into a hole in the service! She said she would call me back after her holiday last October, still waiting for that call!! 

Cannot praise Penny Brohn enough, The Haven too! 

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don't think we have secondary breast care nurses. Was introduced to breast care nurses at my first appointment - but I think they're based across the road in the hospital that deals with primary breast cancer (and other "lady" issues). I'm now seen in the Main hospital oncology department. I have the number for the breast care nurses and have phoned for advice once or twice but they just tell me to call oncologist's secretary. We do have a Macmillan centre and people there have been a bit helpful - although I get feeling sometimes that they prefer dealing with primary patients too - sometimes I feel forgotten by teh health service - we're a bit inconvenient. My oncologist is very good but appears to only care about my lung mets and seems unconcerned about my bone pain. Refuses to allow skin lump to be cut out - despite me asking at every appointment (every 6 weeks for the last year). Best help I have had is from this forum, the live chat sessions, Jane Scarth house in Romsey and Penny Brohn in Bristol.

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Carolyn, I'm impressed that you iron. I only use my iron when I sew. Like to make sure things are flat before I sew them. I will iron if it is for a special occasion. Other items get tossed in the dryer to releasee the wrinkles. I do mend clothes. Used to patch hubby 's work jeans. He is a carpenter and was always hooking them on nails. He even had me teach him how to use the sewing machine. FF

 

 

 

 

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Yes it would be great to have a secondary nurse, it's really a very different job from primary and could make a real difference. I so admire what these nurses do.
Bon, I also had a two hour wait once, the result is that now if I get to see the doc less than half an hour late, I feel really pleased!

Ironing? Ha!
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There is a secondary breast cancer nurse at my hospital. I’m glad other people are getting them too as it’s helpful x
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Great you have a secondary breast nurse mines a great support. Only bad thing about nice weather line drying means can't get away without ironing as much 😕
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Yes, it’s strange but I no longer do ironing... maybe I’m a

 

slut! But himself used to do all his own..but recently told me he is now bored with it!

 

Well I’m sure I used to when working, but often used to hang stuff on an airier in the airing cupboard, or put some in the tumble.d. Love and hugs to allxxx

 

mo8jan🤗😘

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Bon.

I pushed myself and finished the ironing so now I get a lay on tomorrow! !

☺☺☺☺☺☺
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Better set the alarm click Carolyn.
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Ironing, whats that? I'm uncivilised.
Had onc appt today. Scans to follow but had a wonderful surprise, they've got a secondary breast care nurse now. Had long moaned about the gulf between primary and secondary care. She might even be starting a support group. No wait to see onc either. What will they think of next! (Once waited 2 hours)
Highlighted
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Re: Bone mets - please join in

Hello ladies. .how is everyone?

Well my hubby is brilliant around the house since i had this cancer thing apart from two things ..changing a duvet cover and ironing. ...
Today I'm sat at the dining table facing a huge pile of ironing ...he said " be careful and don't push yourself. ...just do half of it " ...☺☺☺

You can always get up a bit earlier tomorrow and do the other half ! Bless him.

Hugs xxx
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Sarahlew, Great news on your scan! Congrats!

 

Anne, That's wonderful you were able to go back to work. I've only had one bone strengthening injection and had no problem with it. Mine is new and given differently. I only get it every 6 months. It last somehow for that long. I get it for osteoporosis. I have heard other ladies say they ache after it. 

 

FF

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Re: Bone mets - please join in

Hi Anne, definitely, almost like a heavy cold was coming on, without the sneezes! I found it got a bit easier after a few months though. Hope work is going well x

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So pleased about your scan. That’s great news
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Hi all
Great news you are back in work Anne - it's nice to get some sort of normality and sense of identity back that work can give. I remember feeling achy after first injection but no problem since. Some good news today scan is stable so to continue letrozole and repeat 3 months. Thinking of everyone having results today.
Best wishes sarah x
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Hello All I hope your scans go well. I am back at work. Bit nerve wracking. The bone injection seems to have made me achy and a bit unwell. Is that normal? Hope you are all well and looking forward to the sunshine! 

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Hi Tatiana

 

Good luck with your onc apptxx

 

Moijanx

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Good luck with your onc appt Bonxx

 

sorry about all the symptoms

 

love and hugs,

Moijanx

Community Champion

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Good luck with the scan Carolyn

 

😘moijan

 

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Why didn't they send you for the MRI before the appointment !?!?  Grrrrrrr!! Maybe the support will give you some relief. You lucked out with the taxi service. Hope the tire is fixable. 

 

Good luck with tomorrows scan. 

 

FF

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So ladies my hip physio appointment was today after waiting 4 months for ..we left nice and early this morning ..guess what ..flat tyre !! How did that happen. Anyway rung taxi firm and lucky had a car across the road at Costa Coffee so got to hospital on time !
Nothing magic though ..got a support thingy to go around hip and waiting for mri scan before they can do anymore! !
Tomorrow got ct scan early. ..phew no lazy week for me ...maybe next week. .

Xxx
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That's so encouraging x
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yeh, appointment free week for me too,first in ages.

love and hugs to everyone

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Morning ladies, from a very cold and wet Hampshire. All the sun must have been concentrated into the far west over the weekend - not a glimmer here and me getting very cold ankles wearing ankle skimming jeans with slip on shoes whereas I should have had on my winter boots! Fingers crossed the weather improves as it should over the week. FF, isn’t it great that the weeks we look forward to and cheer about are the ones we don’t have any appointments for 😂😂. What the bloomin disease has done to our expectations! However it’s always good to know you didn’t need to go anywhere medical as I call it, including doctors, dentists, opticians - they all come under the same banner and it’s typical for me at least that I’ll have to go to one (or all of the above) on my week off from hospital appointments. Bring on the sun for you as well.

Anyway, hoping anyone getting results this week has good ones and everyone else has as few appointments or side effects as possible.

Take care all

Nicky x

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Hi everyone! Just checking in to wish all a good week. I have my first week in months without a medical appointment. Wish I had off from work too. I could use a total break! I could use a beach day!

 

Hugs, FF

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Hi Silverlining,

 

i have hand tremor in my left hand...think it’s likely due to the chemo.....I noticed it about 3-4 years ago when on Cape.

 

 

someone else  had mentioned sore fingers on palbociclib, I was later surprised to read that palbo can cause peripheral  neuropathy, so maybe that’s what the sore fingers are about

 

hugs

 

Moijan🤗

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Hi Tatyana

Glad you enjoyed your weekend in Devon. We went to Cornwall for the day yesterday to watch daugher-in-law equestrian eventing. weather not so good there. She's 4 months pregnant but I guess it's ok, her mother did it and produced 3 children.

Good luck with your onc appointment. I've got one on Thursday. Have been having all kinds of symptoms but then I always do.

 

Bon xx

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Hello tatyana
Well you have been down here with us Devonshire dumplings then ..weather has been pretty good depends on what beach you were on.
I do hope you can continue with cape as it seems to be a good drug. ...
I'm having hip physio tomorrow and scan on Tuesday. .both early starts so no lay in for me !
☺☺☺☺
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Hi Carolyn, hi everyone. Just on our way home from a weekend in Devon visiting my stepson and his partner and my lovely step,-granddaughter, age 3. Had a beautiful sunny day yesterday, must've been in the best place in Britain, sitting on the beach!
Seeing the oncologist on Wednesday to see if I can continue with capecitabine. I'm having a pretty good quality of life, but feel the dodgy nodes are getting worse, so I'm not sure what he'll say. One thing I've learned, whatever you expect to happen at a consultation, it's usually different from what you thought, so it's better to try not to think at all!
Good luck to anyone else with medical appointments this week!
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Hello
Just noticed this thread has slipped a bit down the list so thought I would just post to bring it back up as it's the most popular one here .

Hope everyone is ok and enjoying a quiet Sunday. ..no Durrells or Good Karma Hospital tonight. .boo hoo ..will have to put up with himself watching cricket again...like watching paint dry!
☺☺
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My children are 21 and 24 and we’ve been completely open with them all the way along. They have been wonderful - very strong and supportive. I can’t think the nurse would have said anything if she wasn’t sure. I pretty much knew when my bone scan was done that they’d seen something. I very much hope you are clear and you can get rid of the cancer and get on with your life x
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Hi Anne,  

 

thanks for replying. I've been reading your posts & am sorry to hear of your dx. You seem to be coping much better now. Its a scary situation we find ourselves in.

My main problem will be telling my 19yo daughter, shes an only child & we are very close. She is away at university at the moment. Husband is very supportive 

 

Pebbles x 

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You sound as if you’re in a good position to get rid of cancer. The ladies here are very experienced and will reassure you that the treatment is doable. They’ve all been through it and coped. Best wishes
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Please help me ladies. I’ve been told that my BC has spread to my lymph nodes in my neck. I had a bone scan on Friday & the nurse said “I shouldn’t say anything but that looks ok to me” please God he’s right. I’ve had a CT scan & it hasn’t gone to any organs. When I had a meeting with my Ong she said 6 or 8 rounds of chemo & then herceptin. I’m very scared x
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I haven’t had that but I’ve only been on meds for a week! Plenty to come I imagine x
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Well gorgeous weather again ...hubs bought a new all singing all dancing lawn mower yesterday. .got it home and unpacked. .didn't work so took it back for a replacement.

He's up at silly o clock this morning assembling it ..a boy with a new toy ..he shot across the lawn doing wheelies with it ! Maybe he should have bought a "senior one" that was a bit slower !!
Grass looks nice though. .hubby not looking so healthy.
Hugs xx👍