Up The Farway Tree

 4th Chemo down...

I had my 4th (and hopefully) final chemo on Friday.   I had slowly recovered from whatever I was fighting off the previous week and my bloods were fine for going ahead with the cycle.  Although I do feel as if I've dragged myself through this recent cycle, so hoping this one isn't too bad and nothing untoward crops up!  My chest hasn't been 100% in recent weeks but Newcastle seemed happy enough for me to proceed and the CF team are keeping eye on chest.   My lung function is still fairly stable on home monitor (still not safe to get it measured at hospital) so that is at least reassuring.  My weight is struggling - I'm the lightest I've been since transplant, although the steroids mean my face doesn't look like I've lost any!  I think once chemo is finished I will find it easier to put weight back on, so just focusing on keeping it stable with supplements.

The doctor is hoping I can be fitted in for another full body CT scan in couple weeks - enough time for cycle 4 to work but before 5th cycle would be due.  The current plan would be to continue Rituxemab infusion alone if nodes still present, but to remove the CHOP (chemo) part of "R-CHOP" in order to reduce risk of further sepsis and admission (especially with Covid rates).  I got the impression it was likely that will need to continue Rituxemab so I am just assuming that will happen at the moment and would be due 18th dec.  I am just so glad that wont be getting the chemo part, as that would just have been hitting hard by Christmas day.  Thank goodness for small mercies!!

Speaking of Christmas - we have decided to just stay here and have it with the three of us.   I really can't afford to take risks at the 11th hour when we are so near having a vaccine and I've kept myself protected for this long.   I was 100% decided after having a phone appointment with Newcastle.   The consultant has been phoning every month for a review and I happened to have appointment the day government announced about the 5 days relaxation of rules, so they did ask what I was planning to do at Christmas.   They mentioned that there have been deaths in patients with solid organ transplants and patients very unwell in ITU - especially given my total immunosuppression from chemo (which will remain for some time after I finish) they advised that anyone visiting me should really have been isolating for 2 weeks prior.    Mum essentially has to isolate in order to take me to chemo appointments (when Andrew working) and we wear masks for car journey.   It's impossible for everyone to isolate in lead up to Christmas so it's just easier for me to do my own thing and stay as safe as possible.

I am really surprised at the 5 day relaxation of rules across the UK,  being able to travel from high rate areas to low, and no social distancing indoors  - it seems completely senseless to me.  I had expected maybe a couple of days, local travel and social distancing in place.  I understand that people are fed up with covid rules and need some family time - but I just think it will prolong the whole thing and we will be back in lockdown in January with another spike in cases.  Although a vaccine is on the horizon we need to get there without unnecessary deaths.   I certainly wouldn't want anyone to be on there own (and thought bubbles helped with this) and I think people would have made their own choices regardless.   However I have spoken to quite a few people who intended to stay at home, and now feel pressured to visit family because it technically "allowed".   It's also very frustrating to hear the government is considering prolonging the school Christmas break to compensate for the 5 day relaxation of rules - as if the children haven't missed enough school as it is.   It's so tricky - although children tend to get mild illness, during the 2nd wave they have become the ones most likely to be bringing it into the home, because they can still transmit it.  So any increase in overall rates following Christmas will increase my risk from Estelle.  But this has to be balanced against her need to be in school, which is so important.  We will just continue to do our best to keep safe.

I'll try to blog in couple weeks once I know more about what's happening next, as I am expecting to be pretty wiped out in coming days.   On a positive we did get our Christmas tree up (early I know) as I didn't think I would be fit by next weekend.  It's looking lovely and festive  - nothing nicer than some twinkly lights to cheer you up :-)