This weekend I finally cried. I can’t remember the last time I cried properly. Certainly years ago, probably decades.
January 2017 was undoubtedly a month to forget, but not just because of my own diagnosis.
Firstly, and more pressingly, poor Clara went through the mill over the last month sorting out a full-time carer for her mother who suffers from Alzheimer’s and her frail 90-something father. It is not long before a more permanent solution (i.e. a care home) will be needed and now Clara has to deal with that too. As I write she is up North visiting her mother in hospital and her father at home.
Then, a week ago, my ex-wife Tania asked me to look after Rosa whilst she had a stay in hospital to remove a large lump suspected to be related to ovarian cancer.
I almost cracked on Thursday morning. Having got up at 4:30am to drive to Tania's house in Surrey, dropped Rosa off at school, and seen Tania head to the hospital, it was standing room only on the train to Waterloo. I had a busy morning of work meetings to look forward to but more importantly the big meeting with Dr T at the hospital at 2:30pm to tell me officially what I already knew.
Coming off the platform and making my way towards the underground, I was astounded to be greeted by women collecting for ovarian cancer. Whilst hundreds of commuters streamed onwards obliviously, I stopped to get a £10 note out of my wallet and struggled to squeeze it into the collection bucket.
“Do you know someone who’s affected?” asked the white-haired lady kindly.
“Yes,” I grunted, somewhat muffled, avoiding eye contact. I felt the urge to unload my woes on the unsuspecting charity volunteer there and then: my ex-wife in hospital having a tumour removed, my Parkinson’s diagnosis, my wife’s battle with family crises, and – you really couldn’t make this stuff up – my daughter’s cat having died yesterday.
But stoically I kept silent, moved on, held back the tears, and went to the office.
The meeting with Dr T was as expected, early onset Parkinson’s, described as idiopathic, but almost certainly related to my family history of the disease (most notably my mother was also diagnosed about six months ago), giving me around 20 years to live. He was sympathetic but also put a positive spin on things: I could expect at least five years of working normally and there was no hurry to change my life arrangements. The suggestion of brain surgery sounded a bit scary and is something I will need time to get my head around, if you can excuse the pun! But more of that later. Clara joined me at the appointment and, needless to say, was very supportive, despite her own ongoing travails.
One strange aspect of the meeting was my rapid adoption of medical terminology. I already talk about olfaction rather than sense of smell, and diplopia rather than double vision. L-dopa, substantia nigra, deep brain stimulation, dopamine pathways – I’m all over it.
Dr T referred me to a Professor in London. I looked him up and he sounds like the guy: a specialist in young onset Parkinson’s and an active researcher into genetic causes of Parkinson’s. So the next step is to arrange a consultation which could be the start of a long journey with him. Perhaps it will also be the start of a symbiotic relationship: he can use me for his research and I hopefully get the best medical advice. In a perverse sort of way, I’m actually looking forward to it – as Clara said to Dr T, I’m a scientist at heart….
There was better news that evening as I took Rosa to visit her mother in hospital: the operation had been successful and it was probably just a cyst and not cancer after all. Rosa seemed pretty down, understandably given the situation with both her cat and her mother. I gave her a few hugs and encouraged her to go to bed reasonably early.
I slept badly on Thursday night in Surrey and Friday was a tough, tiring day, despite working from “home”. Tania came home around lunchtime and I told her about my diagnosis. We didn’t really need to speak about the long-term implications for me as a father, as these were fairly obvious.
By the time I drove from Surrey to my actual home in South London on Friday evening I needed a release. And so, listening to Magic FM, I had a good cry whilst crawling through South London traffic.
As I’m sure many others will relate, when all is said and done, for most people it’s their family and friends that matter more than achievements. I reflected on the gloomy, rainy streets of Merton and Mitcham of the limited “active” time I have left with Rosa, the thought of maybe not surviving long enough to see her (first!?) wedding day, and the thought of what all this means for Clara in the later years.
There are a hundred other practical questions to deal with too: what do I do about work (I already kicked off a referral to occupational health), when do I start treatment, will I need to move house, how long will I be able to drive, what should I do about my finances, should I seek out a support group, when do I tell Rosa, and so on? Of course, being the scientist, I wrote a list that I have started to systematically work through…
These problems and questions won’t go away but for now, as I write on Sunday evening, I feel so much better for the simple cathartic act of having had a good cry.
