The recovery from radiotherapy to my cheek, chest and shoulder was going through the motions, uncomfortable, painful, slowly, surely but well! I was all set to return to my work office this week when it all went pear-shaped four days ago. I was fine up until four days ago, and then I woke up with a massive headache (not like a migraine, but a new pain I couldn’t understand), and lost part-strength in my arm and gained weakness in my leg only down the right side. I went back to A&E because something switched, in my gut, something did not feel quite right.
Following a CT and MRI scan of my head, it turns out it is not related to the side effects of radiotherapy in my cheek, I have two new metastatic tumours in my brain pressing on the area which controls balance and muscle movement. My oncologist consulted my neurologist, who treated me with Gamma knife for my first brain met a few years back; it has been decided surgical removal of it is not an option nor is any precise radio surgery such as gamma knife or proton beam. Good old fashioned radiotherapy, treat the entire brain, we might catch what we still cannot see, what we might have missed! But what no one would risk to touch!
It came as a shock. The scans look pretty bad. I turned my back on my head for 1 year and look what happened. I have been fine, have felt nothing, been busy living, and now it wants to rear its ugly head at 3cm. You could have notified me earlier you were in there- you really are a beast. I have had a day to process the idea. Assessing myself now, I cannot stand with out toppling over and cannot focus my vision! My balance is all over the shop but the steroids for the moment are keeping inflammation around the tumours and head hurts in check. What can I do? This is what my life is now, deep down I am not really surprised because this is how Angiosarcoma behaves but it is relentless, still has this calibre to shock, it just doesn’t stop at this stage, it never stops.
This doesn’t mean your life has to suck. You can still have it!!
It’s all about the ‘Survivorship’ — it has become my duty in life to survive it, but you have to want to. You want to keep going forward. Otherwise you might as well go step off the highest bridge. Life is not only about what you are planning for your whole life but how you live in a moment too, how you view what you see in the world, take in and process the details around you and what you do with your time now. Maybe I contemplate ‘now’ because I might not have the luxury of time. I can live with this if It still allows me to work, travel, walk, feel the world, feel emotion, feel love, to communicate, to be me. I walk in my life because I want to live but I also know my mortality is a part of that life cycle. It is on my radar perhaps a little prematurely , but we shouldn’t be so scared to think about it every now and again. There is no doubt that you do think about it when you are living with something incurable and progressive. It is an acceptance of the hand you have been dealt but as long as you have hope, you can still defy everything and anything you want. It doesn’t have to be such a morbid thing, call it a celebration of your life and a testament to your own strength,resilience and existence. We all have it, more than we give ourselves credit for.
I don’t know but there is a realisation that I cannot worry about how much time. Too be honest I am not actually stressed about it. Maybe I’ve had 3 years to get used to the idea. I gauge myself only on how I feel in the now. I’ve never asked my oncologist for a prognosis because I’ve never believed it would help me to know. For others they like to know, for me no. As my oncologist always tell me, he cannot give false hope but would always love to be proved wrong.
Why put so much pressure on yourself? When you see life from this side of the coin, you realise your destiny is different. What is mapped out for us, from when we are young, the direction we are guided in, and the things we are taught we need to achieve in life is not a massive ‘this is what you need to achieve to prove we have been successful’ tick list. Education tick, mortgage tick, family tick, children tick, job tick. Maybe in my head, it would be wonderful and idealistic and incredibly lucky to experience all of these things but maybe not everyone is destined to have it all. That takes quite a few years over the human life-span, and you also have to roll with the spontaneous, life-altering, unpredictable moments. It doesn’t mean you’ve failed and it certainly doesn’t mean that you will fail at life itself. As much as we like to plan, now really does matter too. Now, are your building blocks. Sometimes ‘now’ has to be enough.