Tuesday, 7 August 2012

Brentuximab: fatigue, aches and hair loss (oooh and rollerdisco)


I woke up this morning not in Portugal like I planned. I bought a ticket ages ago but subsequently spent all my money so I couldn’t actually even get to the airport. Epic me fail. But also I have been so busy lately I feel like I need some down time.

The accumulation of Brentuximab has begun to kick my ass a bit, I wake up aching every day, usually my legs, then it may move in to my arms. I am spending a fortune on over the counter analgesia cos I feel like a wuss asking Doctor for something stronger as the pain’s not that bad on the old pain scale, from zero being none to flipping agony being ten it’s only about a three but just constant.  I can sleep for ages, my default setting is one of general lethargy. And I have chemo brain big time. In the last few days I have forgot my shoes, my wallet, parked outside the flat  in the wrong bay, forgotten to book a badminton court when I am playing in fifteen minutes (twice) had countless rambled conversations with hubby where half of it occurred in my head (although after 15 years together he really should try harder to mind read)

So I have had a few days of general blah! Suffice to say it’s time to turn it around! I started the day early by making a delicious life giving juice , apples, spinach, celery, ginger, pineapple and cucumber, honestly properly lush! Just before Spain we followed the Jason Vale book 'supercharge your life in 14 days' and it was amazing, we felt fantastic mentally and physically and lost 9 pounds, bonus! So back on it.

Also on my taking control of my life schedule today I am going enter 2, yes that’s right 2 ten km runs in September, fact. And I might even actually go for a run today to get started, I will probably just spend the time I coud be running writing a training schedule and colour code it with felt tip, possibly a weight loss projection graph to sit beside it on the wall, or might actually go for a run, who knows?

I have an appointment to get my hair chopped at mid day, the shedding is not speeding up but it’s not stopping, having been here twice before I am taking action early. Might go for pixie cut type thing, with a low thresh hold for a buzz cut when it gets more obvious.

En route to the hairdresser I am going to print out what I have written of my book, what was that? Writing a book? oh yeah, that’s what I said print out  my book what I is writing! I have about 20,000 words so far but I need to see it on paper and scribble a bit. All I will tell you is that it’s a novel and I am writing about what I know :)

Good news flash! Three of my favourite people are moving to Exmouth! How ace is that? Very ace. Having banged on the last two years about how great is is to live here they have seen the light.

Oh and remember that bit about down time, that goes out of the window temporarily this weekend when, wait for it…there is an actual roller disco at the Pavilion! OMG this is pretty much a bucket list event! Can’t wait!

In summary, it appears that I cannot be super human 100% of the time but reckon I can rock a good 80%- maybe! The minor complaints I have are all treatment related and not actually anything to do with cancer because that is now history! Brentuximab has saved my life and here I am whinging about the side effects finally catching up with me. That does not detract from  my gratitude and respect for this wonder drug. On that note - I will go and fetch myself some more delicious juice and start planning my running schedule......

Hasta luego
(is it?)
xxx

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