Bleak outlook

Sorry that you are also suffering from brain mets.  Good to hear your team are optimistic about the treatment.  I hope I can have similar.  Good luck with yours x

I hope you have some more info soon.  Bummer with the trial.  There's so many treatment options and hopefully there's one for your scenario. My youngest just left for Uni on Sunday.  I know what you mean about the kids.  

Hi Elysian,

Hopefully once you have a new plan to follow you will be in a better place mentally.  Xxxxx

Well my consultant has messaged to say mdt has suggested whole brain.  Doesn’t sound good but to be fair I don’t know the facts yet so better to wait till when we meet on thursday to discuss. At least I am able to go private with this so will have planing scan same day.  

Then I’ll have to talk to the rest of my family - I thought it better to wait  until I knew more as there will no doubt be questions. I find it much harder to talk to my wider family (parents, siblings) than anyone else.  I hate being centre of attention.  Sometimes I think it would be easier being sad and lonely.  Wouldn’t have to worry about others then. 

So met with my consultant and pleased to have something much more positive to report.

There are a couple of small lesions and some other microscopic ones on the brain (so small we couldn’t spot them). She seemed quite confident wbrt will sort it out and I shouldn’t have too many problems with it.  She doesn’t think I’ll need steroids either which would be good.  If all goes to plan and everything is stable after 28 days I’ll be able to rejoin the trial (the trial doctor has asked to be kept in the loop with progress).  The remaining body scan is still yet to report but from what she could see there isn’t anything too bad and it’s much how it was - bit bigger but not a lot. What’s more she thinks it could be my cough is due to after effects from previous radiotherapy rather than actual cancer.  

This makes me feel so, so much better and is just what I needed to hear.  Ready now to get on with the next stage of the journey.

Hi Elysian, This sounds like very positive news, I am so pleased for you. Also the fact that you can go back on the trial is amazing. I hope all goes to plan!

I’m glad you have you have a clearer picture of where you stand now.

sounds as though your consultant is good and explaining properly to you x

Yes, I thought the same about the consultant.  Issues and way forwards were clearly articulated.  You've got a good one there Elysian Hang onto her!

Yes, she is very good - calm and considered.  I trust her judgement completely.  We are on first name terms these days and it's good to know she's on my side

Wow it’s been 7 months since I posted this! A lot has happened since!

So I had RT in October and coped with it quite well.  A follow up scan showed all was stable in my head so I was allowed to join the trial.  I’ve been on this now since December.  It’s not been an easy ride.  Suffered a fair bit from sickness and diarrhoea and have had to reduce the dosage.  Seem to be coping better as a result.  Scan wise, things are ok.  No definite sign of progression was the last read out so I’ll take that as a good thing.

At least it is spring now, which always makes things seem better and we are nearly in exam season so all being well I will stay out of mischief for a few more more months to allow my teen to concentrate and enjoy their prom.