Up The Farway Tree

Waiting....

I had the PET scan successfully last friday.  I had been quite worried about whether it would go ahead because your blood glucose levels need to be within quite strict limits.  This is because the radioactive tracer is attached to a glucose like substance, which is then taken into cells.   Normally it wouldn't be an issue but because my steroids have been increased, my bloods sugars have been wild!  Luckily they were ok on the day!  

I did managed to speak with the lymphoma nurse yesterday.   My scan will be discussed at the team meeting tomorrow and they will decide if need another CT and/or what next steps are.   I have been doing a lot more reading about PTLD and it does sound as if a lot of people do response to the reduction in immunosuppression alone - so it still might be the case that I don't need more treatment.  I will post once I know myself what is happening!

Otherwise, I have been ok.  I have added in some more supplements for my weight and have been eating better, so hopefully that will now go in right direction.  My lung function has stayed stable so far.  I am feeling generally tired and not quite myself, but to be honest, half of that might simply be the stress and anxiety!  I do struggle with being in limbo and always cope better with a plan!

I think its also been a big adjustment with Estelle going back to school.   I really did need the space and time to myself, but it is also harder to keep a good routine when she isn't around.  The covid situation is frustrating for everyone now and it is really hard thinking about going into winter with numbers rising.  Locally we have been in lockdown for few weeks so yesterdays announcement wasn't much change for us.  It is difficult not being able to have anyone to visit the house, as the weather isn't really ideal for garden visits now!  I am so lucky to have Andrew working at home though, or I think I would feel very isolated.   It's really hard not having mum and dad to visit - I would normally see mum quite often and it all feels very strange.  I only saw her last week as needed someone to take me to hospital appointment (can't drive on the current pain meds) and Andrew needed to stay here to get Estelle for school.  It's not great for mum either, as she would really like to be here keeping me company.  I think its important to follow the rules though - if everyone thinks they are the exception to the rules, then nothing will ever change.  What we do now is going to affect how Scotland copes with covid over the winter and I am certainly not going to be responsible for adding to the spread!

Hopefully by the end of this week I will have more to report!