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 :-)

Hanging on in there..

I'm just passing mid cycle again and hopefully it will be smooth sailing between now and chemo next Friday.   I was feeling not bad after the last chemo - bar the usual nausea and sore mouth.  I seemed to have a lot of nervous energy though (I think steroid induced) and was finding it hard to be inactive - I kept sorting through drawers and trying to organise the playroom, in anticipation of Christmas.  It's good having the energy to get some things done but to be honest the internal feeling of restlessness is quite unpleasant.  I find it hard to sleep and switch off during these periods despite knowing my body probably needs to slow down.  On stopping the steroids after the 5 days I then did crash energy wise and more or less ground to a halt!  I have piles of clothes sitting out mid sorting that I didn't have energy to finish - will have to wait until my next steroid boost haha.

I have actually feeling quite rough this week and have had a borderline fever, headache, achiness and a general feeling of being unwell.  I honestly thought I was headed for another sepsis as that's how it started the last time!  I spoke to the Beatson and the CF team - as my temperature was borderline and seemed to be settling,  they were keen for me to stay at home unless worsened.  Thankfully my temperature has stayed down and I've certainly not got any worse.   This decision not to be reviewed unless really necessary was influenced by the covid situation locally and weighing up the risks of attending a hospital when rates are so high.  For this reason, I am more than glad we have moved to level 4 in an effort to drive down numbers.  I could argue that the restrictions in level 4 maybe don't even go far enough - a lot of places will still be open and it's nowhere near the measures taken at the start of lockdown, but I really hope it will be enough to bring things a bit more under control.  It would certainly help make me feel safer going for treatments.

On a similar note, I am not sure how I feel about all the ongoing discussions about relaxing the rules for Christmas.   I understand how desperate people are to see family at this time of year, but it does seem really counterintuitive to relax the rules for the sake of one day - and possibly then have an increase in cases mid winter when hospitals will already be under strain.  I think people will make their own decisions anyway but if the government gives the green light for family gatherings, will people then feel under pressure to meet up, when they might not be completely comfortable?  I wouldn't like to think anyone would be on their own, and would hope the bubbles idea would make sure this wouldn't happen.   I am honestly not sure what the answer is  - I guess there isn't one!  I love Christmas and I feel sad thinking of not seeing people - but I have also spent so long shielding, coping with hospital admissions alone and making hard decisions about protecting myself, that it would seem ridiculous to throw that away!  I guess we will just have to see what happens in the coming weeks..

The emerging vaccines is a great positive in the news just now.   At the moment we don't know how long the immunity from them will last, or if they are effective in various patient groups...but it's still a huge step forward!   I was reading the government website detailing the interim advice on vaccine priority and was quite surprised to see that people with underlying health issues are actually quite far down the priority list (I would be no. 6 group)  - read here.  Obviously care home staff and NHS staff are first in line, then those over 80; over 75; over 70;  over 65 ...then high risk adults under 65.  It's interesting to note that age really is a huge factor in covid risk -  simply being over 65 is more risky than people realise.  Hopefully once vaccines are approved, the programmes can be rolled out quickly so that we all can get a degree of protection and start getting back towards some normality!

In other news Estelle is getting excited about Christmas and having a hard time deciding what to put in her letter to Santa haha.   It will be a much quieter build up this year, but Estelle is happy just doing things at home  - especially a bit of Christmas crafting, baking and just enjoying having mummy and daddy playing lego and playmobil.  In some ways I'm quite glad not to have so many commercial events - the year before last we saw so many Santa's that even Estelle was getting oversaturated....and also wondering why none of them looked exactly the same!  You can get quite caught up in booking all these 'magical' events, then run yourself ragged trying to fit everything in.  Maybe we can benefit from slowing down a bit this year :-)

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