A Sense of Tumour

A big day.

August 23, 2019

When I was diagnosed as seriously ill, I started to prepare for the ultimate catastrophe: being dead. That really would be a bump in the road to recovery.

Funnily enough I was actually least concerned about me. Perhaps it’s common in serious conditions. I know very little about a terminal diagnosis and the emotional impact on people. All I could think about was how it would affect everyone around me.

I’ve always been terrified of my own mortality. My wife will confirm it’s been my biggest fear for a number of years. This brain tumour is likely to shorten my life but now my biggest fear is the way in which I’ll pass away. Supposing the tumour starts to grow again, all of my symptoms will return. It’s likely to be a very painful end which I find scary. I imagine I’ll be sedated and made unaware of this pain. This makes me even more fearful for my loved ones, having to see me in such a state and presumably in hospital. How will they cope?

My imaginary funeral started to form in my mind. I found myself selecting songs I’d like to be played and writing a wish list of what I’d like to happen. It would be a big day for everyone.

These songs all mean something to me. You can listen by clicking here.

We did the hard work of making wills and trying to think what might be the best outcome. Doing such a task really makes you think of what will happen to those you love and how to pass on as much of your estate as possible. It’s also a reality check; you can’t take it with you. It’s made me scrutinise my own spending habits and I wonder if all the things I’ve ever bought were really just testament to modern day consumerism. This does not, obviously, apply to the cars I’ve purchased.

So I need to get a grip which is why this post is short and to the point. This is a very gloomy outlook and not within my control. It might be a good idea to jot down what I’d like to happen. That would at least ease the stress of anyone wondering what my wishes would be and whether I’d approve. But it’s not something I’m prepared to dwell on any longer. It’s a waste of effort that’s better expended in the life I have now. My resources are precious enough as they are and to fritter them away on something beyond the end of my life seems careless at best.

What I can do is focus on the present and near future. I need to interact with the current situation. No one’s really in control of the way their lives end no matter what happens and it’s perhaps helpful to modify my thinking that I’m like everyone else just on a compressed timescale.

I’m still able to do a lot of things at the moment so I’d better get busy living.
Does he really need that stick?

August 22, 2019

The first rule of stick club is that you need to have a stick. A common phrase I’ve come across is, “Not every disability is visible,” which is very true.

I finally accepted I needed a walking stick because I kept veering into other people or, rather more worryingly, lurching off the pavement into oncoming traffic.

It was incredibly hard to accept my mobility and coordination were being severely affected. I used to describe how I felt as being constantly hungover but recently I came to realise it was more like being drunk all the time. I’ve had my fair share of big nights out, the aftermath of which my wife will attest to, having seen me lying lifeless on the sofa curled up in my big hoodie in front of the Formula 1 on a Sunday lunchtime, but this was more like feeling as though you’ve had just one too many, all of the time.

I ordered a collapsible, cheap, lightweight walking stick in early spring 2018 with the intention that it could go in the recycling when I’d recovered. Except I didn’t know at the time if I would ever recover enough to walk without it.

I started using it where I wasn’t visible. My encroaching disability didn’t need to be on display to everyone just yet. I knew questions would spark up that I didn’t yet have any answers to. My parking space at work was a short distance from the office but after falling over a couple of times during the walk I had to admit defeat and use my stick. I would diligently collapse it, hiding it in my work bag before entering the building. I could just about make it from reception to my desk on the fifth floor without falling over. Colleagues parking in the same car park realised I was walking with a stick and out of the blue the office manager visited me to ask if I needed a personal evacuation plan in the event of a fire.

By the time I was fully signed off work I was using my walking stick all the time. I even needed it to put the wheelie bins out for collection.

It was brought home to me during my recovery from radiotherapy. In early 2019 my wife and I made it out to do a bit of shopping and have some lunch. Prior to my illness we used to be experts at having lunch, usually accompanied by a nice bottle. Walking down the main street of our local city centre my wife became aware that one of a group of lads was shouting, “Does he really need that stick?”

I didn’t hear it, I was already in a bit of a daze from fatigue. It happened so quickly, the moment passed. I wasn’t really in a position to defend myself. No one particularly enjoys confrontation on the streets. We tried to laugh it off. In hindsight I should have told them why I needed it but it wouldn’t have done any good. The trouble with stupid people is that they’re so stupid they don’t know they’re stupid, so presenting an intelligent rebuttal is a waste of time and effort.

What struck me was how vulnerable I suddenly felt. Walking with a stick earmarked me.

On another occasion in the local town centre I was walking as usual with my earphones in. I probably got my phone out and continued on my wavy path using my stick. I was being followed. Daylight muggings aren’t common locally but I was becoming easy pickings. Without missing a beat I saw two more people join my original follower. It was obvious they thought I was heading for the local dimly lit multi storey car park where I could be relieved of my possessions.

Except there’s an entrance to Boots just next to the car park which is where I was actually going. I ducked in, saw the three of them glare at me as they headed to the car park. How were they to know I couldn’t drive? It made me more aware of my surroundings and I rarely walk any more with my earphones in.

I think about my previous attitudes to disability. I never harassed people or thought unkind things, but I probably didn’t take as much care as I could have done around vulnerable members of our society. I don’t think I saw disabled people, wrapped up in my own busy life.

Now I see vulnerable people everywhere. Spending significant amounts of daytime in the local town centre highlighted to me how many people are either unemployed or unable to work. I think of them in my privileged position of a phased return to work. I have a physiotherapist and I’ve learnt to walk without my stick. Taking more care around such people, being the first to offer assistance, stopping to help someone who’s dropped all of their loose change (as happened to me on several occasions) are small actions that might be appreciated.

I haven’t put my stick in the recycling. I can’t bring myself to do it as it’s literally been by my side when I was at my worst.

It’ll be quietly put away.

I will probably need it again in the future.
King of the road: giving up driving.

August 12, 2019

“Sir, based on the information you’ve just provided you’re going to have to stop driving immediately and return your licence to us.”

The DVLA Drivers Medical Group know how to tell it like it is. That was the end of the conversation I had with them two days before my brain biopsy. Of course it was something I’d known was coming for quite a while. I already knew the risks of a biopsy and the post-operative side effects would make me unsafe on the roads. As a member of the Institute of Advanced Motorists since 2004, and having volunteered as an Observer to help other people achieve membership, safety has always been my paramount concern.

Still, internally I raged at this decision. But I’m a good driver, I reasoned with myself. Not good enough at this stage of my diagnosis. Dangerous, in fact.

At one of the last consultations with the neurosurgeon a couple of weeks before any surgery took place I revealed I was still driving. She was taken aback. It wasn’t illegal but she strongly urged me to give up driving. As it happened my car was in the hospital multi-storey car park that day, my wife and daughter were with me and I judged it just about acceptable to drive everyone home, garage the car and call DVLA in due course. My wife couldn’t drive at the time but has subsequently passed her test. I just didn’t have the energy to deal with the fallout of having my car collected as I’d been OK to drive to the hospital an hour earlier.

At the last consultation with the neurosurgeon prior to the biopsy, the clinic was running late. My wife suggested I joke with the neurosurgeon that “she’d need to make the consultation quick as my pay and display ticket was running out for the car.” I didn’t make this joke but I thought it exceptionally funny.

The DVLA revoked my licence as I didn’t have a diagnosis at the time. I was experiencing double vision and about to have my biopsy so the default position was to revoke the licence. I then had a duty of disclosure to the insurance companies to keep my two cars insured against fire, theft and third party damage, and it was part of my finance agreement on one of the cars to ensure comprehensive insurance was in place. I couldn’t simply SORN the cars, lock them up in a garage, hoping for the best. My wife only had a provisional licence at the time and the underwriters wouldn’t accept it for a main driver because she would have to be accompanied by someone with a full licence but my entitlement was revoked. The solution turned out to be relatively simple. I put my mum as the main driver on one of the cars, wound the mileage allowance down to a couple of thousand a year, fully disclosed that the car would be in our garage and my parents live an hour away. This was all acceptable and my premium actually decreased. The other car I owned outright and my wife could be insured on it as soon as she passed her test. A different insurer, different rules and no outstanding finance to worry about, an agreement was made. If you’re in a similar situation, see if the underwriters can give you a set of conditions to satisfy.

More pertinently, the loss of my driving licence felt like a huge loss. I’d wanted to drive ever since I can remember, loved cars since forever and every time I set out on a journey I actively enjoyed driving. My first driving lesson was the day after my seventeenth birthday. The feeling of independence was a total joy. As a young boy I used to look at the patch of tarmac that connected our suburban house driveway to the road, realising that our driveway was connected to everywhere in the country, and just a short ferry trip to the continent. My very favourite country to drive in has been France.

I wasn’t always a good driver. Far from it. I had a few accidents early in my driving career which at the time I perceived as not being my fault. After writing off two cars and a van I decided that perhaps there was some further training I could do. I joined the Institute of Advanced Motorists, retrained over twelve months and have been safe ever since. I had a minor accident on the motorway with my wife in the car just before our daughter was born a couple of years ago. Without my extra training it could have been a major incident but resulted in nothing more than a new bumper and bonnet being required.

To bring the story up to date, I’ve submitted all the licence reapplication paperwork to DVLA. Speaking with people at the local support group, their advice was to ignore the DVLA’s published timescale of a decision within six weeks. I would be looking at somewhere in the region of twelve weeks just to get paperwork in the right place from my consultant and/or GP. Neuropschology confirmed there was no impairment with decision making or visuospatial ability. My double vision has been fixed with the addition of prisms to my glasses. Five and a half weeks after submitting everything to DVLA I received a response to say they’d written to my consultant. Just this morning I received a letter calling me for an updated MRI scan at the end of August so I imagine my consultant wishes to review my scan and see me in clinic before responding to DVLA. My consultant may elect to stick to the rule of twelve months elapsing from the end of primary treatment. If he decides to recommend I regain my licence (under annual review) I think DVLA will take around four weeks to make a decision. This makes a total timescale of fourteen weeks and they may still not accept my reapplication.

If you’re in a similar situation, get any relevant tests done and perhaps try to coordinate your paperwork going in nice and early with a decision being made around the time twelve months have elapsed since primary treatment concluded.

The location of my tumour is not well defined and the DVLA’s guidance is currently undergoing revision. In fact, there’s a movement to providing slightly more leniency to those drivers with low grade brain tumours (page 12) who are not suffering from seizures. Below is some guidance I found and may be useful to you. In the meantime I have my fingers crossed that I’ll be driving again by Christmas.

I realise how lucky I am to be in a position to be considering driving again. It may not work out for me and I’ll have to find a way to deal with it. I know in a lot of cases it’s just not possible and if you hold a licence for lorries and buses then the rules are very strict.

Good luck if you are reapplying.

DVLA – Assessing fitness to drive

DVLA – Medical Conditions

DVLA – Reapply for a driving licence following a medical condition

DVLA – Brain tumours and driving

DVLA – Information Leaflet 94 Customer Service Guide

Cancer Research – Brain tumours and driving

The Brain Tumour Charity – Driving and brain tumours
The time has come to make a video diary.

August 11, 2019
I read an article some months ago about parents with terminal illnesses are advised to video themselves answering typical life questions that their kids might have growing up. Research has shown that kids really value seeing their parent’s facial expressions, hearing their voices, hopefully getting across some of their personality. My diagnosis means my life will probably be shorter than expected but I simply don’t know when, or if, that might happen.

I want to ensure my daughter knows just how much I love her if the worst happens. I don’t want to wait until it’s too late, perhaps unable to speak or unable to put it together properly. My wife and daughter deserve better than that so whilst my health is relatively good and the outlook is largely unknown, it’s time I put it together for her and my wife to refer to. I need my wife to know I’ll always be by her side during the parenting journey and I hope this is something she can refer to in the coming years if I’m not here. I want to help them both.

The thought of my young daughter not having me around is almost too much to bear. We had a loud thunderstorm this afternoon and one particularly violent crack of thunder had her galloping across the lounge straight into my arms, looking for comfort and safety. It makes me cry to imagine such a scene without me. My wife could provide exactly the same comfort. I just mean I sometimes imagine my wife and daughter together with my wife having to explain why daddy isn’t there and never will be. It breaks my heart.

I asked my wife for her opinion and she thought it was a good idea but had two really great insights:
1. Some videos should be all about me. It would help my daughter get to know me. What do I like doing, what music do I really like, why do I like cars so much. Also, what kind of anecdotes can I tell her about how my wife and I met, what adventures have we been on, where do we like going.
2. My wife mused that maybe she should do something similar. Her health isn’t in question at the moment but no one knows what might happen. It might be fascinating for our daughter to get to know us how we are now, rather than some years in the future after being her parents and that’s all she’s known of us. A very interesting thought.
Perhaps I should do videos for more people. I don’t know. It’s the middle of the night as I’m having these thoughts and it’s always darkest just before the sun returns.

Google Family seems like a good place to start with a stunning 2.5 stars out of 5…

I’ve chosen Google as a repository. I’ve had an account for many years and I’m taking a guess they’ll be around long enough for my daughter to access her account in a few years. Google has a Family Account feature so curation is easy as it can be tied to both mine and my wife’s accounts. I can store photos, videos, even send my daughter short emails for her to read later in life.

But I know it’s the right thing to do now. I need to draw strength from within myself and do it for my wife and daughter. They might need me in the future, perhaps looking at some ‘daddy videos’ when they hit a low point. I comfort myself by imagining that at least I’m in the room with them and they can remember that I love them both, always, with all of my heart and every last breath.