We have all the time in the world … until maybe we don’t !

When I started this blog I decided that I wanted to use it to bring some positivity to my situation, but I also want to keep it real and share the full story.   

So today’s blog is talking about some of the more problematic and difficult thoughts I’ve been having – those that I have found it difficult to talk about and share with other people – my long term prognosis.

December reflections and difficult thoughts

It was my birthday in December.   Normally at this time of year I reflect on being another year older.  I get a little miffed about the additional silver highlights and the increase in laughter lines, wrinkles and general crinkliness on my face !   I might also complain a little (or a lot) about creaky knees and other strange crunchy noises when I get up too quickly and the realisation that I’m definitely not as young, flexible or fit as I used to be.

Any my thoughts usually turn to thinking about getting older, another year around the sun, another year closer to old age.  There is usually a joke or two about not wanting to have a birthday, not wanting to have that extra number increasing at the end of my age bracket.

And there is the inevitable how I can possibly be this bloody old?  How did this happen?

This year has been completely different.  This year, I wasn’t so bothered about the extra silver highlights and face crinkles because I’m just happy to be celebrating being here !

Because since my diagnosis, there is a little niggly thought in the back of my mind that keeps coming up  –  what if this is my last birthday, my last Christmas?  It’s a recurring thought that I haven’t  really talked to anyone about – mainly because I’m pretty sure that it’s not something anyone close to me feels comfortable talking about.

But as uncomfortable as the thought is, it’s a realisation that I can’t stop thinking about.     I’m pretty certain that without the treatment I’m having, I wouldn’t be expected to see another birthday or Christmas.        I asked at the first appointment with my oncologist about my prognosis and she said “let’s talk again after you’ve started treatment” which I think was fairly telling !

 My “long term” prognosis is currently unknown and in all honesty, I’m not entirely sure if it’s something that I want to know.     It’s a lot to think about.   

Obviously, there are no absolutes, no guarantees.   None of us really know how many trips around the sun we have left and anyone of us could unexpectedly not be here tomorrow.  And I find myself wondering – would it be better to know, or to be blissfully unaware?

And it’s really playing on my mind.  Like a permanent loop that I’m finding hard to switch off from. I’m not sure if it’s because of the time of the year – with Christmas and New Year which always makes me very reflective or whether it’s because I’m now half way through chemo and having a half way scan to monitor the progress of my treatment.  Or maybe a little of both!

But the thing is, I don’t feel like I can talk about this to anyone because I worry that it makes people feel awkward or uncomfortable.

The “best before date” statistics are grim

I know this because I did the thing I promised myself not to do and I googled them.

According to Google, Cancer Research UK and published statistics for England,  with the type and stage of cancer I have, just 5 out of 100 people  live for 4 years or more which is a very sobering statistic.  Obviously they are general stats, not a definitive or personal prediction, but nevertheless it’s all a bit shit really.

And I don’t really know how to process it.  Needless to say, I want to be one of the five and live for much longer.   It seems like a pretty reasonable goal to aim for !

Strange isn’t it, because in all honesty, I’d rather know that I have maybe 2,3, 5 years left, then unexpectedly not wake up tomorrow!    I mean obviously, I’d like to have a lot more than 5 years left and there are no guarantees to anything and don’t get me wrong, I’m not planning on giving up if I get to 4 years and 11 months or anything like that.

I think it’s more that if I do have a “best before date” that is looming then, I want to make the most of the years that I do have left.   I don’t want to sweep it under the carpet, pretend it’s not happening, avoid thinking or talking about it, sugarcoat it with false positivity and I don’t want to feel uncomfortable or guilty for being currently obsessed with it.

Writing this out has helped me to understand, that really, I just want to be open, realistic and honest about what is happening for me and to feel able to talk about it openly.  And I don’t feel able to do that.

Why don’t we talk about end of life and death more?  

It’s a huge thing isn’t it – to be given an approximated “sell by” date, to come face to face with your own mortality.

It’s so alien to how we usually live and our social norms, especially as Brits as we tend to avoid talking about anything remotely uncomfortable!

According to Macmillan in 2024 “We estimate that there are currently more than 3 million people living with cancer in the UK, rising to 3.5 million by 2025, 4 million by 2030”.  On average someone in the UK is diagnosed with cancer at least every 90 seconds.

Obviously, they’re not all going to die anytime soon, some will be cured and some will live with cancer for many, many years, but it’s likely they are all pondering their own mortality in a way they weren’t before their diagnosis.

And I can’t help wondering how many out of those 3 million people, like me, feel unable to talk openly about it.  Which, when you think about it, is kind of weird because the only certainty in life is that at some point it will end!   Nothing else (except paying tax!) is as guaranteed as the fact that we will all eventually pop our clogs and die.

The only difference is that some of us get advanced warning and have a rough idea of when it will be and some of us don’t.  Obviously life would be weird if we all walked around worrying about how many trips around the sun we have left and we can’t stop doing things, we need to live and to live well – at least I think we do !

We have all the time in the world …

We kind of go through life with this idea that we have  all the time in the world like it’s some infinite supply.  But I think when life happens in such a way that we are in the unusual position of having an indication of how long we might have left, maybe we should just embrace it rather than shy away from it.

I can’t help thinking that if you have 2 – 5 years left to live, it’s better to know and it is definitely preferable to suddenly and unexpectedly being alive one day and not the next.   If like me, you’ve ever lost someone close in a shocking and unexpected way – you will know how  truly brutal it is for those who are left behind.      I’ve experienced both – losing someone suddenly  and unexpectedly and having advanced warning that someone is very ill with a limited time left.

When you compare the two scenarios, knowing you have time to prepare and do all the things you’d like to do while you still can, seems to me, to be infinitely preferable to unexpectedly popping your clogs one day.

The problem is that I can’t quite decide if I really want to know or not – because I’ve been thinking that once you know, you can’t unknow it !  Then again, we’ve all heard those stories of someone who was given 3 years to live eleventy-squillion years ago and is still going strong.  Well maybe not eleventy-squillion years, but hopefully you get my point !  

I would like to think that knowing you have maybe 2 – 5 years left can be a positive thing – it would allow you to plan the future you have left, appreciate each and every day and make the very most of the time you have.

I guess you could argue that you can live in such a way that you make the most of everyday, without ever needing  or wanting to know or worrying  about how many days you have left.   And I wholeheartedly buy into that idea, but being told you have cancer makes you question everything – especially your own mortality.

At this point,  I’m still not sure if I want to know my prognosis or not – it’s something for me to take a while longer to ponder on, I think. 

Some of the questions I am asking myself to help focus my thinking are :-

• What difference would it make to have a rough idea of time left?
• How would it benefit me?
• How would it not benefit me?
• How would it change things? For better? For worse?

In the meantime, one thing I am 100% convinced about is that we should get more comfortable talking about our own mortality and death.  Life after all is so very fragile and anyone of us could die unexpectedly tomorrow.   Perhaps if we normalised talking about death more, it would feel a lot less uncomfortable and easier to discuss.