The calm before the storm....the normal between the crazy, the bubble before it bursts.
That's what these days feel like. I am now coming to the end of the second of three weeks between chemo treatments. One more week and I have to return to the weird and wonderful world of the Seamoor Unit and the chemical madness of chemotherapy - CHOP style.
It does feel a bit like Rachel and I are living in a strange bubble, heads in the sand, life goes on-ness. For most of the time it's quite easy to forget that I am ill. ( BTW...I use that term ill, but I don't feel like I'm ill) I have been to work, I have been out and about on the moor doing press-ups here and there. We have been out on our bikes in glorious blue sky sunshine and walked across mirror sheen beaches pounded by winter waves.
Not sure if it's the effects of the cell-killing chemo or the steroids but my back and hip have been so much less painful. So exercise has been much easier and so so much more enjoyable, and with this it is easy to forget what is going on in the background of my life.
But then things happen that startle you back into reality....A simple splinter gets infected and I have to go on antibiotics, tingling in my finger tips (a side effect of chemo apparently), the exhaustion at the end of the day, battles with my employer over being able to to do meaningful work whilst having treatment and the exact interpretation of a 'fit note', but mostly... what has started to happen to my hair...
No one said it would hurt, but it does; my scalp and my hair hurts. It's a strange, uncomfortable feeling like all my hair is planning its sneaky escape. The physical pain is the hair follicles dying and the emotional pain is the hair slowly but very surely evacuating my poisoned head. Luckily I have really thick hair, so hopefully the process will take a while but I plan on having it cut really short this week...more mental preparation I suppose, and more jolting me back to the reality of life with Lymphoma.
I know Rachel feels the same, she goes off to work and comes home to a meal cooked by me and listens to tales of my day at work or the location of my latest press-ups. But at the same time, in quiet moments she remembers the battle we are facing together and wonders what is the best way to support me... what is the best way through this?
For now the best way is the deep sand and not exactly a buried head but a maybe a head slightly blinded by sand in the eye. I think the longer life feels normal, the longer we can still enjoy the things that make us happy without illness getting in the way....the better.
So one more week before I go back for more chemotherapy, one more week of calm before another impending storm. Hopefully we'll weather this second storm as successfully as we did the first storm and hopefully the chemical warfare will continue to mend at the same time that it is breaking things...and hopefully the pain in my scalp will go and the losing of my hair won't be quite as dreadful as I fear it's going to be.
One more thing, thank you for all the brilliant, crazy and bloody hilarious press-ups- they are the best way I know how to fight this thing, and they mean the world to us.
You write about it so well and so powerfully Nick. Enjoy the week of calm.
ReplyDeleteHurting hair? That's crazy. Good luck with the next storm. U guys have such an amazing attitude. Keep going with the press ups (I'm looking forward to tomo so I only have to do 1 haha!!) lots of love xx
ReplyDeleteHi Nick,
ReplyDeleteThanks so much for connecting me with the blog. You can do this. Glad to hear exercise has been more tolerable and fun this week. Enjoy your weekend!
S