This post will consist of some early thoughts about Autism and Cancer and also some pictures from my new abode. However before getting into the main meat of the post there is an issue to address briefly first…
AUTISM AND FUNCTION LEVEL LABELS
In brief: DO NOT USE!! For more detail read the rest of this section. Before moving on to my onw thoughts a couple of honourable mentions: the Neurodivergent Rebel has posted some good stuff about the abuse of function level labels in relation to autism and Laina via both thesilentwave.wordpress.com and her sharing site lainascollections has also covered the issue.
I am often labelled as a high functioning autistic (indeed readers of this site will be aware that I was already into my 30s before being recognized as autistic at all) but that is highly misleading and dangerous. People noting my overall intelligence and articulateness and the fact that I devour books at rapid rate assume I need little support. Not true – there are some things that I struggle badly with and where support is needed. The “High Functioning” label is at best misleading and at worst it is downright dangerous.
MANAGING AUTISM AND CANCER
Managing cancer is a challenge but considered in isolation one that can be handled. Managing autism is sometimes a challenge (and sometimes autism works in my favour), and taken in isolation it is not too difficult. Managing cancer through the prism of autism is an enormous challenge. Apart from my regular blood thinning injections (I had two blood clots while being treated in hospital), which are still administered by a district nurse I am now largely responsible for taking my own medications of which there are huge quantities. I also need to do things like monitor body temperature (currently seems to be stabilised at 36.1 C) and weight (one effect of being so ill is that now weigh less than at any time since my mid-teens.
A small army of staff at Addenbrookes went way above and beyond the call of duty in looking after me and treating me during the worst of the illness. To name names would be invidious – you all know who you are and you are all absolute heroes. Understaffed and underfunded as it is the NHS is kept functioning by the efforts of people like this, who can still crack a smile when they have been rushed off their feet for 13 hours straight.
HOSPITAL TALES: WALKING STRENGTH BACK INTO THE LEGS
For about the first two weeks I spent at Addenbrookes I was effectively completely immobile (for a few days I was wired up to an oxygen mask), and for about a week before that I had hardly been mobile at all, so I lost a lot of strength from my legs. Once I was able to be mobile I took to walking up and down the ward when I felt strong enough, starting with small distances and working my way up gradually. Before I finished I could on a good day walk up and down the ward 20 times without stopping. I felt a benefit of this yesterday when I did a small amount of walking in King’s Lynn town centre to do my christmas shopping.
I promised some pictures and here they are: