Up The Farway Tree

3rd cycle down!

My excellent news for this week is that the CT scan showed a significant reduction in the abdominal lymph nodes after 2 cycles!! I am beyond thrilled!  I think they are pretty much back to where they were in August at time of diagnosis (in fact I think smaller than this!) so we have managed to get control of the rapid growth that had occurred just prior to chemo.  This would be consistent with my pain - over the last few weeks I have only been taking my long acting painkillers and not needing the short acting for node pain.  The EBV levels are not detectable anymore which is also fantastic.  Given the good response to the 2 cycles, the plan is to hopefully stop chemo at 4 cycles. I will get scanned again after the 4th.  The aim of treatment is for complete remission but if nodes were still present after 4th cycle then remission might still be possible by continuing the Rituxemab infusions alone, which would be easier to tolerate and much less toxic.   I think treatment plans would be much more straight forward if I didn't have the chronic lung rejection, as this is obviously a huge factor.  - we are trying to balance risks (infection, covid rates, side effects) against benefits (quicker response from chemo, protection of lung function). The chemotherapy, although putting me at risk of infection, is ironically also protecting me from rejection.  It's a case of taking it cycle by cycle and making the right choice for me at that time but it's all looking very positive and we are making excellent progress!

I had my third chemo yesterday - getting the chemo itself is the easy bit, so I'm not looking forward to the next couple of weeks but at least I know more what to expect.  The most important thing is avoiding infection again - I managed last cycle so fingers crossed I can avoid it this cycle.  It's quite tricky with Estelle being at school as she is being exposed to all sorts of winter bugs (never mind thinking about covid!) but I'm am trying to keep my distance mid cycle when my white cells are at their lowest.  The biggest worry about needing admission for infection at the moment is the covid situation in Glasgow - the hospitals are getting pretty full and obviously my usual respiratory ward will have numerous patients but I have to just keep going and keep as safe as I can.

In other news, Estelle had a lovely Halloween.  She dressed up as Mildred Hubble from Worst Witch and was really pleased with her outfit.  She is most particular about getting it exactly right - I even had to dye a school shirt grey and laminate a badge for the outfit!  We did some dooking for apples and I made a Halloween treasure hunt in the house.  We had lots of decorations up (mostly thanks to my lovely cousin Sarah!) which Estelle loved.  I did also paint my face and bald head white to look like Uncle Fester, which was rather amusing - but I'll maybe not post the photo here!  We put glowsticks in decorated milk cartons (great idea via facebook) and decorated cupcakes.  I was exhausted but worth it for Estelle - who said she had the best halloween but maybe next year I could hide 50 things on the treasure hunt instead of 8 haha!!

I'll try and post again once the initial side effects of this cycle have passed.  Lots of love to all my family and friends down south who are currently in lock down again.   Keep safe x