I wrote this post on Facebook the day after my biopsy. It was the first time a lot of my friends knew something was happening. That’s not to say we weren’t in touch, but the lives of my friends were also busy and Facebook has become something everyone my age is using less and less. I’ve published it with a retrospective date and removed names. I hope it conveys how I felt at that time.
So, some news. Like Jude Law in The Holiday, I apologise for the blunt delivery but yesterday I had brain surgery at Royal Stoke Hospital. I’ve not been well for months, I have multiple brain lesions of unknown grade and composition so the only way to confirm diagnosis is a biopsy of the tissue in my brain. It’s left me with a slight bleed on the brain, possibly causing hearing loss and requires a slightly extended stay in hospital. I’ve had so many scans and blood tests to rule out auto immune diseases and I had a trip to The Christie for a bone marrow sample to be taken.
If you haven’t seen me for a while then please don’t be surprised to learn I now walk with a stick, have lost strength in the left hand side of my body and my conversation skills are problematic. You won’t always understand me and I certainly won’t always understand you. I can’t operate quickly enough to process incoming sensory information before it comes out again. I live with constant pain and numbness in my head, across my face, jaw and tongue. I nap for a few hours everyday, I wake up at the same time as the birds in the morning. The pain is unreal, like nothing I’ve ever experienced. I have double vision. I can’t taste food properly and sometimes can’t swallow. Obviously I’ve had to give up driving for now but I carried on as long as I was allowed. DVLA don’t like drivers having holes drilled in their heads so I have to prove in the coming months that I don’t experience fits or seizures. We have a double garage that we cleared out so at least my cars are in storage.
I was signed off sick from my existing job during my notice period as I already had a new job to start. It took a long time for a potential diagnosis to be made (and I’m still waiting) and my new employer made all reasonable adjustments for me to commence employment. I have been treated with care, compassion and dignity by my line manager and HR department who are giving me space and time for treatment. It’s a great job with a lot of home working due to my support of multiple UK sites and it’s a very family-friendly employer which is so important with a one year old.
I don’t know what the future holds. Neither does the medical profession so the advice is to spend as much time as possible doing what I can with my family at home. [My wife] is amazing, providing support and help whilst looking after our daughter. She’ll blush when I say this, but our love and marriage is a major source of strength and I thank my lucky stars every day that I have her. It’s hard being ill, but it’s also hard looking after someone who’s so ill and keep a one year old happy at the same time, especially when the one year old doesn’t yet know how to sleep through the night. [My wife] continues this day in and day out.
My parents and [my wife]’s mum are helping out where they can and I’m extremely grateful for their support.
Of course [my daughter] knows no different. She loves me just as much as she did yesterday and wants to play with me just as much as she ever did. I love our daughter so completely and every day I’m proud to be her daddy.
I think a lot about the future. It’s a wake up call to discover you might not have as long on the planet as you hoped. Make sure you have insurance that pays incapacity benefit. Not to put too fine a point on it, I concentrated on life insurance which is no good if you simply can’t work. I remain hopeful this is a year long break in my career whilst I recover. Make a will with a proper solicitor, make sure it says what you want to happen. It’s a grim task that, once done properly, you can forget about.
And what’s my overall advice? Make every day count and don’t do things that don’t satisfy you. I don’t believe in the mantra that everyone has a single purpose. Maybe you like doing lots of different things and that’s ok. As long as the bills are covered then try a few different things. Enjoy the time you have as I can guarantee that it’s finite; yours might be longer than mine. I’m not going to get all Life Advice here, just quietly go about making things happen.
I’ll be at home quite a lot once I’m discharged from hospital until next spring so if you wanted to visit us you’d be welcome. There’s so much going on that it’ll be tea and cake (you bring the cake, make sure it’s a good one yeah?) It would take a bit of planning as we’re trying to keep things normal for [my daughter] as she goes to nursery three days a week and [my wife] is still working full time although she’s taking annual leave for a few weeks whilst we get a diagnosis and we know what treatment is proposed and make plans accordingly. I also get tired really quickly almost to the point of narcolepsy. But it would be nice to see you if you’re around.
I wish everyone I know a long and happy life.
Finally, always be kind. You might never really know what burden people are carrying.