Hi- Newly diagnosed

Thanks for that. X

Just a quick question. Which hospital gave you a PET scan? My oncologist told “we don’t do it for breast cancers”. I had particularly asked for one too. 

Thanks again,

Hello to you too . Thank you for such a lovely post.  It’s great to hear you went on holiday - every January I get obsessed with going away and I am a bit addicted to ‘A Place In the Sun’ and other similar progs at the mo! 

You sound really inspiring and thank you for your good wishes .

My very best wishes to you too xxxxx

Hi I am under Essex trust Hospitals.  I can't answer your question it does seem a bit odd. How do they know you have mets if you have not had a scan.

I will say I questioned my ONC for a while and had to push for a bone scan which I have just had.  I just wanted to ensure that the osteoporosis I have was not confused with mets.

I have a PET scan every 3 months for the moment, although I am led to understand this will soon move to 6 monthly - not sure how I feel about that to be honest.

I think you should ask you ONC WHY - if you have mets then at least you know where they are and they should know what they are dealing with for the appropriate treatment.  I am not experienced enough to give you a clear answer but perhaps put another post on her titled 'PET Scan refused'.  Hopefully someone with more experience and knowledge can help put your mind at rest.

x

Hi

Thank you - to be frank reading other posts on here has kept me positive and as we cannot change our situation, I don't want this to define me - I want to live for today.  I only plan about 6months ahead and you need things to look forward to.

I like a place in the sun but don't get to watch too often as I am still working full time - need to pay for those holidays :-).

There is a group being set up near me (10 miles) very soon for ladies/gents with secondaries as there was no real meeting points for us.  This is a chance for us to get together share stories, natter laugh and so on for a couple of hours each month.  The first one is next week, I think it is great as so often we can feel isolated, and this is a good chance to meet people, make friends and generally have a laugh with each other.

You are already inspiring Ruby2016 by posting and sharing you experience which will help others.

I wish you well with your treatment. Keep talking its good for the soul, It does not have to be about our diagnosis, sometime you just want to leave that behind and just talk about any kind of rubbish.

Best wishes xxxx

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

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.

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 

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. 

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

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