I hope everyone has had a satisfactory Easter wit lots of chocolate. I have to admit my dining room table is groaning with a ton of the brown stuff – there’s so much I can safely nibble away in the knowledge that the kids will not notice me snaffling away at it. Actually in some crazy attempt to freak me out, Cass and Kits have hardly touched any chocolate at all. It’s quite odd, It’s like there is so much of it hanging around they can’t see it anymore, it’s like wallpaper. It makes me wonder if shouldn’t just liberally sprinkle sweets and chocolate around the house on a regular basis. But I know if I did it would backfire like most of those reverse psychology tricks you try and pull on your kids……
It’s been hard not seeing my boy for the Easter. It’s the first bank holiday of the year and we usually throw ourselves into it with enthusiasm by consuming too much food and wine etc. So I have I’ve been keeping myself occupied by doing DIY and sorting out Cassidy and Kitty’s room ready for them, to move in to. Currently we are living like squirrels in one nest; all piled into my room so I’m working to extracting the little uns ready for when Paul comes home. I have to admit though that it’s been really comforting having them nearby and listening to them sighing and snoring and sniffling in to night. But a lot of things that used to keep me awake now soothe me to sleep and vice versa…..
I saw Paul in the flesh last Thursday for the last time before he went neutropenic Since then I have done a few food and pyjama drops and scuttled past his room. It’s been so hard not to peep in but I think that would make it worse somehow. Hopefully he should be building up his cell count by the end of this week so I can finally see him. He’s doing really well, well really well in a chemo patient kind of way. He’s not horribly sick or anything and he’s building up his physical stamina slowly. It’s amazing how a couple of weeks in ITU has diminished his ability to get around in a way that we all take for granted. Sometimes I call him and he’s hard at work on the exercise bike or has had a walk up and down the ward. It sounds small but these are such big steps for Paul.
I think he officially looks like a cancer patient now because his eyebrows have finally dropped off much to Cassidy’s delight! He’s been asking for photos…....And of course he is still, if not more, in full steam ahead mode. He was seen by a palliative doctor the other day (I guess an unofficial councillor or something) and they seemed pleased with his general out look and said he seemed to be coping well and Paul said “I’m not coping – coping means accepting the status quo – I’m fighting” and it made me think about how I use certain words to describe my state of mind. It’s true – when I think about it – coping means treading water and as Wendy said, it’s a passive word and not at all representative of our situation. So for the first time I can say with pride and at the top of my voice “I am NOT coping!!!”….
So we are still in that stage where no news is good news really. Just waiting to see if this round of chemo does what it’s supposed to do. I guess we will know in the next week or so. Cass and I have been doing our chants every night without fail. He has a very regimented and systematic routine of lymphocyte busting which we go through at bedtime, which includes: Fire balls, anti toxic spray, bombs, dough-balls, distracters, giant balls and then a lot of kisses. They all have their own little hand actions to go with them too.
So keep chanting people even if the chocolate has made you sluggish. And remember the next time someone tells you you are not coping – smile and feel proud!......
Kisses H and P xxxxxxx