So I promised to share the good, the bad and the ugly. And despite an amazing week in Greece, it’s not all plain sailing.
I got home last night with one of my besties in tow, here for the week to generally support, help and look after me. And by 9pm I’d cried twice and had at least one meltdown. I felt exhausted, frustrated, and physically ruined.
The truth is, this situation is already very different to last time, and I’m in unfamiliar territory, which I hate. I’ve repeatedly said that, last time round I think I had it easy. Sure it was a horrible time, and yes we put my body through some pretty nasty stuff. But I was super fit, the ‘intruder’ was confined to my breast tissue, I could feel it, it was easily accessible, and we got to it quick enough to stop it wreaking too much havoc. The challenges came from the affects of the treatment and, whilst tough, I could handle that as I saw it as a necessary evil which was ultimately going to fix the situation.
This time, there are two on the go, both in trickier locations, affecting my organs and my body’s ability to function… and that’s before treatment has even started. And in the meantime, I’m just seeing and feeling my body deteriorate, and there’s naff all I can do about it.
The lesion in my lung is (so far) not causing me any issues. But the one in my brain has already damaged my hand, pretty much rendered my arm useless from the elbow down and despite my attempts to keep what little movement I can, the reality is that my arm simply hangs by my side or, worse, trails uncontrollably – knocking things over, getting caught behind door handles and stuck in clothes sleeves… it’s weighing down the whole left side of my body, causing my shoulder to stoop, my head to hang to one side, my torso to twist and my back/spine to hang off balance. This also affects how I walk, with my legs moving in slow pigeon steps, feet dragging, I’m unable to stand on one leg, touching my toes is possible but I’m bent and twisted. And couple this with the added weight and swelling from the steroids I’m now taking, my back aches like hell and my posture feels ruined.
And I haven’t even started treatment yet.
As someone who’s always thought about the importance of core and posture (my beloved Hampa used to tell me stories about how his father tied him to his chair as a boy to teach him to sit upright!) skeletal strength, stretching, fitness and mobility… this for me is just mentally draining and currently my biggest challenge – it’s just heartbreaking. The damage to my hand may be irreparable – fine, we’ll find a way to work around that later. But watching my body cripple without a sense of ‘but it’s for a long-term win’ just makes me feel helpless.
So last night I wrote a long email to my medical team, basically saying “I know you guys are doing everything clinical to treat this thing, but I need to do something too – I need to stop / prevent / offset further secondary damage to my body, to give myself the best mental and physical chance of fighting this thing while you do what you need to do… give me physio… give me stretches… give me exercises… tell me how to lie / sleep… tell me how to sit / stand / walk… tell me what not to do… BUT LET ME START NOW!
Watch this space…!
So many people wouldn’t even ask those questions….if you don’t get the answers you need, keep after them like you’ve always done.
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