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Bone mets - please join in

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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🌞
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Re: Bone mets - please join in

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.
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Re: Bone mets - please join in

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

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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

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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.
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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!
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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.
Community Champion

Re: Bone mets - please join in

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

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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
Community Champion

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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!

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

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

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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

Community Champion

Re: Bone mets - please join in

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

Community Champion

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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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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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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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 😕
Community Champion

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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
Community Champion

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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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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! 

Community Champion

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Hi Tatiana

 

Good luck with your onc apptxx

 

Moijanx

Community Champion

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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

 

Community Champion

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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