Back in the summer I wrote a post ‘Five things I wish I knew when I collected my A-Level results‘ and it got a great response; that response could have been because it was topical, because it was blunt, because it was a ‘five things’ rather than a deep ramble about one thing, or maybe just because there was something useful in it. I particularly liked the format – so I thought I’d repeat it here and share five things that in hindsight I wish I’d known when my Dad was diagnosed with bile duct cancer (cholangiocarcinoma) five years ago. I know it wont generate the same reaction as the last post but I hope that it might be useful for someone, somewhere. Disclaimer: as ever it’s written from my perspective as someone whose Dad is terminally ill, this isn’t necessarily what my Dad would think at all!
1. A cancer diagnosis changes your life, and the life of those who love you, in an instant but it’s not all doom and gloom
Cancer, the word is just so harsh in your mouth, leaves a kind of after taste. I wasn’t blogging at the time my Dad was diagnosed with cancer but if I had been I’m sure I’d have talked about the shock of it (Dad was a recently retired, fit and healthy, non-smoker, very rare drinker who had a good diet and ticked all the right boxes for a long, happy and healthy retirement) and how finite, gloomy and hard it felt. Quite simply it’s not fair. There were many emotions, inequity and anger were high on the list; there was very little to feel happy or content about – especially with such poor odds, there were no happy stories of recovery; it felt like someone had shut a big door and locked us all into a prison cell of cancer – and we were thrown into it together. That said, that technicolour experience and heightened awareness extends to the good times too; I’ve found myself appreciating the things that really matter, feeling grateful at the start of each day (when you’re not just feeling exhausted – see point two), making important decisions and really questioning whether you’re living your life in the best way you could. It has also meant that causes for celebration, a wedding, new baby, even a funeral, are really savoured, I really find myself grateful for the focus that Dad’s cancer has given us all. Life just feels that much more real, the good as well as the bad.
2. You can spend a long time living/dying (delete as you see appropriate)
My Dad has fought hard to stay alive, that’s the only way I can describe it, a long, thoughtful and determined fight. He knows that he is dying, he knows that his body is fighting itself, he also knows that we all have the greatest admiration for the way he has approached this experience – at least I hope he does. The thing I wanted to touch on though is that you can spend a long time engaged in this battle, or dance, pick which ever metaphor works for you. The cancer becomes the focus at the centre of everything and its exhausting, it’s always present for everyone, not just the person with it. I can’t remember the last time I made a decision and didn’t consider cancer within it; big decisions like quitting my job, moving where I live, disappearing on an adult gap year to find myself (two of these have not yet, and may never, come to fruition) but also more everyday ones like whether to book a holiday or weekend away; whether or not to have a drink tonight or being ever ready to jump in my car and head to their house; whether to walk to the train station or drive so my car is there if I return in a hurry etc etc etc
That level of focus, pervasive focus, is hard to live with. You don’t get much time off from it, I’m sure a lot depends on personality and approach to life but cancer has been ever present for over five years now. For many of those years it has felt like death was imminent, just lurking around the corner ready to pounce. Dad has had a number of episodes where he has recovered from very serious surgery, infections, complications, treatment side effects, there have been so many times when I thought he wouldn’t live much longer. The key learning for me has been the importance of staying connected, of trying to find down time, of recharging and in hindsight there are holidays I wish I’d taken, choices I may have made differently, I perhaps would have been more selfish if I’d known Dad would live as long as he has, but mostly I’d have stocked up on energy in the early days so I had more to draw on now.
3. Take a wallet with change for the parking machines and leave it in your glove compartment
OK, simple one this one, and it only really applies if you’re a driver, but I can’t tell you how much stress was caused arriving at hospital (sometimes because things had deteriorated, sometimes as an emergency, many times as a visitor) only to discover, once you’d managed to find a parking space (small miracle in itself) that I didn’t have the right change for the parking meter. It took me months to actually get around to addressing this proactively and removing this stress from my life by getting myself a parking wallet! There are also other practical things that make life easier, I keep PJs and a change of clothes at my parent’s house for unanticipated overnight stays, I had a wash bag and new outfit in the boot of my car for the best part of two years – ever ready for the unexpected.
4. It’s a game of chance not science
Sometimes I still can’t quite get my head around this. Years ago if someone said cancer my thoughts and word association would have been: white coat, laboratory, science, macmillan, no hair, chemo drip, death, something like that, all quite clinical I guess (possibly due to my undeveloped and over simplified understanding of science). Now if someone says cancer things are quite different, I’ve realised that it really is a game of chance a lot of the time, one of the images would probably be a handful of dice. That’s not to denigrate the work of the amazing people who have cared for Dad and treated his cancer, but it’s to acknowledge that even with the amazing advances of science, and phenomenally dedicated, passionate and knowledgeable staff, a lot of the time there is no certainty, no science, it’s a more complex and natural equation. There are few certainties, it is impossible to know how Dad’s body will react to the treatment given, how long he has left, how many more times he can fight back from a brink – life, cancer, his treatment really is more personalised than I’d imagined, and with that it is impossible to know or find certainty. So the easiest thing is to accept that these gods and gurus, the consultants, specialist nurses, oncologists, surgeons, healthcare assistants, hospice workers, who offer so much are just mortal like the rest of us, and they can not provide certainty, so I’ve tried hard to stop seeking it.
5. People are inherently kind and good and support will come from the least expected places
Finally, it’s what it says really. My Dad’s experience of cancer and the impact it has had on my life has reassured me of one thing above all others, that people are inherently good and kind. Some people want to fix things, some want to ignore it, some will discuss it and want gory details, others will disappear from your life quicker than Usain Bolt could run 100m, some will emerge from the shadows of distant relationships, some people will find you and new friendships will forge at a really difficult time. My friends, family, twitter network, colleagues have been amazing, not all but on balance most, and the good far outweigh the bad (who aren’t actually bad they just have their own reasons for not wanting to deal with cancer/you/life/death right now).
At times knowing someone you love, who loves you unconditionally, is living with or dying from a serious illness can be overwhelming. It’s quite a challenging thing to face up to and live with. It impacts on nearly everything. I only make plans now with people who I know will understand if I break them at the last minute, I’ve been a fairly rubbish friend (not to mention girlfriend) over the last few years and the last couple of months especially. My capacity has been stretched to a point that I didn’t know it could reach without snapping. It has been, and continues to be, one of life’s biggest adventures and I am beyond grateful to all of the people who make it an exciting and uplifting adventure and not a dark, tragic, disaster movie.
If you are reading this because someone you love has just been diagnosed with cancer, or any other serious illness, know that it’s not all bad. It is unbelievably hard at times, but it is also amazingly rewarding. I wouldn’t wish cancer on anyone but I am humbled by the experience, the support and the learning that has come from this crappy situation. Find people who are positive, look for the good and remember you are never alone…and it’s perfectly OK to have bad days/weeks/months, just surround yourself with people who will walk with you until the good days come bouncing back.