I’m 47 years old and it has been 17 years since my first symptoms and I guess I have at least another 17 years of brokering a truce with my pituitary gland. Hence my ‘middling’ status.
I have ‘controlled Cushing’s disease’. I’ve had two semi-successful pituitary surgeries and six weeks of radiotherapy, which completed on Halloween 2022. The last three years have been quiet – no signs of the feared regrowth or of the predicted pituitary failure. We watch and we wait.
Across the board it’s a mixed bag of changes. I am producing healthy amounts of cortisol myself (no steroids – yay!) and I am only replacing thyroxine and vasopressin BUT I still have most of my symptoms. I’m oppressively fat, I’m frustratingly weak and my blood pressure is worryingly high. Thankfully the oedema in my ankles is better as long as I keep my feet up regularly.
Some small wins – I no longer bruise so readily, the purple stretch marks on my tummy have turned silver and my head hair is gradually thickening and growing again. My chin hair lingers sadly… The radiotherapy caused my toenails to be crumbly until quite recently, so I can now wear sandals with pride!
How do I fill my days?
In a nutshell, I’m currently fully retired. Not quite how I imagined spending my 40’s but here I find myself!
I used to be a primary school teacher and, between surgery one and surgery two, I tried a gentle return to school. I took on roles as an intervention tutor, a supply teacher and then a part-time PPA (planning, preparation and assessment) teacher. In all those roles, I could get away with sitting down quite a bit and there were no break duties etc but quite frankly I was barely managing and it wasn’t sustainable. During the weeks after surgery two in March 2022, I came to the realisation that teaching as I knew it was over for me.
As it happened a close family member died during my treatment and just when I’d run out of earning power, a block of money arrived in my life. Quite frankly, I would rather have kept my teaching job and said family member but it was not to be. As a result, I have a mid-life pension. It won’t last forever and I’m not rolling in it but it’s enough to fund my rehabilitation efforts and protect me from having to rush the process.
In terms of my week, I spend about 70% of my time engaged in what I call ‘body management’. Therapeutic things like sessions in the swimming pool to get my joints moving, yoga and meditation to sooth my bruised brain, lymphatic massages for my oedema and talk therapy to help me make sense of everything that has happened.
The remainder is spent doing musical activities. Before I was a teacher I was a french horn player – orchestra tours, solo recitals, auditions etc etc. This revival of a past self has somewhat crept up on me. It started 2 years ago when my yoga teacher suggested we include meditation to music in our sessions. She would curate a playlist of her choosing and I would sit in my wheelchair, close my eyes and engage in deep listening. It felt like I was visiting a far-off place of sacred importance without having to move a muscle (phew!).
Looking ahead…
Since those sessions, my musical environment has expanded somewhat. I attend concerts as much as I can and I’ve joined a choir. I’m having one to one singing lessons, I’m about to start song-writing lessons, and last Christmas I visited my father abroad to both say hello and to extract my much-neglected french horn from his loft. I’m not quite ready to get it out of its case yet but suffice to say that I’ve got the number of a local brass instrument repairer and when the time is right my newly serviced Yamaha 867D and I will reunite.
As for what happens next, we have no idea if my body will ever gain the kind of metabolic agility that I once enjoyed. I remain realistically optimistic, patient and open to infinite possibilities.
I guess that’s all that one can do in ‘the middle bit’.