We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Hi- Newly diagnosed

Nickyd1
Posted by

Hello! I am a bit rubbish on here at keeping up with who’s who and where I have seen things so thanks for introducing yourself. I have no idea how to tag people! 

I love the positive stories thread, I read it when it was all new and it inspired me.

nicky xx

Jo6
Posted by

Hi

I get confused with all the different scans. I had the big scan with the radioactive dye (was that the bone scan?) and then I've had a couple of shorter ones with the normal dye which I've just had and will have another in 3 months time.

Holiday sounded fab! Always nice to have something to look forward to.

Thank you for the link. I am still struggling to process everything and I miss what I am used to doing as I'm sore and need to be careful, although I'm afraid sometimes that I'm too careful! I used to run and go to gym classes so I'm missing doing those and im currently not at work until I see what's happening but would love to go back to work for some normality as I'm very bored and unsure how to fill my days! Walking helps but friends and family are working through the day. I've very glad this group is here and thank you for sharing.

Jo x
IamLyn
Posted by

Nickyd1 I am a self confessed technophobe and have only just worked out how to tag someone - what you need to do is use the @ symbol then with no space type name of the person you want to tag - this should come up on a list just select the person this will then be highlighted on you post. Only when you send it their name should come up as underlined. I don't know how to tag links or other posts though. But hope this may help.

I am the same as you - it does take time to process and I think have to go through a grieving process first - I am still struggling. I go to work still for many reasons, The normality and I still feel well. work for me has been great, if I don't feel well I don't have to go in.  I have one day off a month for hospital and bone juice other than that for now (knock wood) I feel like me physically.  The mental side is another animal.

My Bone scan  was the radioactive one and my 3 monthly one are PET scans to check my organs of any spread.  You sound like you are on the same path as me.

If you used to run and go to thy gym then I think that should still be ok if you feel well enough.  Speak to your BCN. (Breast Care Nurse). Only my opinion, I spent the first three months being scared to do anything - Now I want to do what I want and not be scared.  You need to be you and still do the things you enjoy.

Best wishes xxxx 

Jo6
Posted by

Hi

Yeah emotions are all over the shop and change daily! I lived and worked away from home and lived on my own and have come back home for treatment. I want to go back to work but it's not as easy- means being away from family support so my whole life has been turned upside down and not sure what to do. My work which I loved and my friends aren't here. I've decided to take a year off to see how treatment goes. My work is hard going so I'm also deciding if I'm physically up to it too. I'm a bit in no mans land and finding it very difficult to adjust!

My spine and pelvis hurt so I've been told no impact sports or heavy lifting so no running- think I'd be too sore to run so I'm trying to walk more. Trying to figure things out whilst trying my best to stay positive. I'm also packing up where I used to live as can't afford it when not at work. I'm travelling this week to do this. I've a lot to think about and I'm a bit stuck! It's exhausting thinking about it all the time. Life has just been very quickly turned upside down. 

Jo x
Ruby2016
Posted by

Hi Jo,

I am not saying my situation is exactly the same as yours but there are similarities- also, what really strikes me is how resilient you are.  I don’t work at the moment, I’ve unfortunately had fatigue/exhaustion since my Primary and in the last year of working, before I got diagnosed with the Secondary in my bones, I look back and wonder how I did it. Most days I actually felt nauseous with exhaustion and I now see it was like I was trying to climb up and over a fence but kept slipping down. I worked with children and I absolutely loved my job so as well as the money I had the incentive of enjoyment. I left my job 3 weeks before my diagnosis as the tiredness was overwhelming. I do a bit of voluntary work 

I just want to take my hat off to you for being able to step back and figure out how to navigate your current situation - taking a year out is a good way of viewing things. Being around family or a support network is vital (in my opinion) Nothing is ever permanent, for good or bad as we know but I just want to send you my very best wishes and to say I admire your strength of character and find your attitude inspiring. 

Xxxxxxxxxx

Jo6
Posted by

Thanks Ruby2016, for your support and understanding.

I also worked/work with children and I really miss it. I could try some voluntary work or cut days but I'm 37 and was looking forward to working for a long time! Like most of us, I wasn't expecting this and was always so careful with my health considering what my mum and sister went though with their cancers. I feel like it's a total change and I'm trying to hold onto my past but know that I'm going to have to look at things differently and just re-evaluate. If I need to give up my job- what do I do and how do I live? Money is required to live and to do some things. I'm very practically minded and a strategic thinker which in my current situation is only making me over think! It's important to breathe and take a step back sometimes and being with family is top of my list just now until my treatment kicks in and I see where I am! It's nice to have others to talk to so thank you for your kind words. I know too well already how tiredness can affect day to day tasks and I'm sorry you had to give up a job you loved. Life sucks sometimes but I think we are all fighters  and we will find a way through! I have a card stuck to my mirror which says:

You never know how strong you are until being strong is the only choice you have. 

I liked it and every morning I read it and think, right day, let's go! Let's do this! Xx

Jo x
Jo6
Posted by

Actually I have to add... on the other side of my mirror I have a card from the film Frozen and it says:

Some days you just don't feel like princessing, your royal duties can wait

And that's ok too! Xx

Jo x
Nickyd1
Posted by

I love that quote, I often say that I want to apply to be a princess but I never see the job advertised.

today though I wouldn’t pass the medical!

Nickyd1
Posted by

I am hoping I have done it!!! 

Thanks for the masterclass. This must be how my mum feels when her internet link ‘breaks’ and I go and click something and it works! 

Nickyd1
Posted by

just chuckling as I tagged instead of you!!! I really am my mum

Jo6
Posted by

lol well done! You've tagged two now! I still have no idea! Yeah I haven't seen the advert for princess either unfortunately! 

Jo x
IamLyn
Posted by

Hey well done for the tag - at least my instructions were followable lol. Now if I can work out how to tag posts etc I will let you know.

However as someone who does not have Facebook, twitter or snapchat (I think that's what it is called) will be a while before I work it out and hey if it ain't broke etc

I have only just started using Whatsapp in the last 10 months so believe me this is progress.

Ruby2016
Posted by

   

Hello! I just wanted to practise tagging too! Thanks for the fab instructions Iamlyn .

Also, I’m a big fan of ‘Frozen’ and looking forward to seeing the sequel. I have a Frozen shopping bag and I love the words on it, 

“Leave a little sparkle wherever you go” 

xxxxxxxxx

Jo6
Posted by

 

Ah... think I've got the tagging thanks! The sequel to Frozen is very good! Worth the watch!

Jo x
Nickyd1
Posted by

Well I am on Twitter, Facebook, Instagram and WhatsApp and they all work differently to this forum. I even tried snapchat but I couldn’t suss it! Oh I am on LinkedIn too for work, that’s probably the easiest to use but is full of show offs ‘ooh, I cannot believe that little old me has been given this amazing award’. Neither can I love, you’re recycling other people’s Ideas. Yuck! 

That’s today’s moan!