How much of human life is lost in waiting? – Ralph Waldo Emerson
It’s a little dramatic but kinda sums up some of my feelings around my current state of being. I feel like I’m constantly waiting. Sometimes I’m actually waiting – for example – today, I’m sitting waiting for my PET scan results to come in. The rest of the time, I’m not physically waiting for something but I feel like I’m living waiting for the next thing. Waiting for the moment that I learn that the cancer is growing again or waiting for me to find the thing that I feel like I’m looking for to make purpose of my diagnosis (metastatic breast cancer/stage IV cancer or my other favourite, a life limiting disease). I feel like I’m wasting time – time that I don’t have to waste – but I just don’t know what to do.
Am I going to look back on my life and have regret? Because I wasted too much time waiting for something more. Or wanting something more but not doing anything about it. Possibly. But am I going to have more regret if I don’t continue to look for that “more” that is currently eluding me? Possibly.
I don’t remember exactly when but around six months after my diagnosis, I did some coaching sessions to try and help me better think through what I wanted to do with what remained of my life. What came out of it were a couple of things. 1. My kids were my priority – I wanted to make sure they would be okay and that I took time to create memories with them. 2. That I had never really thought about leaving behind a legacy before and actually thinking about that made me want to leave behind something. 3. It helped me articulate the privilege I had and a desire to use that to do something more (I guess linked back to leaving behind a legacy).
4. I wanted to find a purpose for “me” with my privilege getting this diagnosis. Not because things happen for a reason – they don’t – but I wanted to find a purpose and reason for me. Since then, I’ve struggle a bit because I keep coming back to wanting to do more with this diagnosis and failing. I don’t like failing.
I was discussing this with a friend the other day and they tried to tell me that what I was doing was enough – being with my kids, raising them, helping them now learn the skills and resilience they will use later in life (when I’m not around) – that was my purpose. Another friend asked me why I was looking for more – why was I not just focused on my kids. My answer to them, is that I am focused on my kids and they are my purpose but they would have been without the cancer diagnosis. I am building memories with them. I hope that I’m showing them – in the face of this shitty disease – we continue as best we can. We still laugh, we still argue and we can also cry about it sometimes but life goes on (until it doesn’t). I love them and they are my world but this is not enough for me to help me find a reason/purpose as to why I got this diagnosis.
A few months ago, a good friend died. She had just over a year from her diagnosis to her ultimate end. And that road was hard, she had intense treatment that made her sick a lot – she didn’t have space to live but just struggle to stay alive. It’s not fair. Why did she only get a year? Why do I get five to ten and the luck to be on treatment that allows me to live a relatively normal life? And if I get that ‘luck’, should I not do something with it.
So I digress, what I wanted to write about was the sense of waiting that I feel a bit paralysed by. I guess to write about it, I also need to explain what it is that I’m waiting for. But really, that makes no sense – this is when I get annoyed with myself – I should not be waiting for this. I should be taking action and doing something to find what I want, not sitting back waiting. It’s very unlikely going to just fall into my lap.
In my defence, I’m not just sitting around doing nothing. I work, I spend time with the kids, I indulge my obsession with racquet sports and love of french fries. Once every three or so months, I see the doctor, do some treatment and some of those times do a scan to see what’s happening with the cancer. The days leading up to the scans and the hours between having the scan and waiting for the report, I feel like I’m waiting and sometimes do literally sit and wait (like right now, refreshing my phone every 30 mins to see if the PET scan report has been uploaded). I spend some of that time reflecting on the past weeks/months and the last year or so – each time – get the strong sense of frustration or even disappointment in myself that I’m waiting for life to happen, rather than doing something about it.
As I tried to sleep last night, I was quite convinced that today I would get the news that I have been waiting for since the first scan after starting treatment that showed that treatment was working. The news that the treatment is no longer working. I try not to think about it and I definitely do my best to not talk about it but I am waiting for it. Waiting for that moment.
I was discussing this with a friend the other day and they tried to tell me that what I was doing was enough – being with my kids, raising them, helping them now learn the skills and resilience they will use later in life (when I’m not around) – that was my purpose. Another friend asked me why I was looking for more – why was I not just focused on my kids. My answer to them, is that I am focused on my kids and they are my purpose but they would have been without the cancer diagnosis. I am building memories with them. I hope that I’m showing them – in the face of this shitty disease – we continue as best we can. We still laugh, we still argue and we can also cry about it sometimes but life goes on (until it doesn’t). I love them and they are my world but this is not enough for me to help me find a reason/purpose as to why I got this diagnosis.Each time, I think – when/if the results are good – I’ll change the next three months. I’ll do more and stop waiting. Because I am wasting time by waiting. It seems I’m bit of a broken record though, keep coming back to the same point.
I do realise that I need to be kind to myself. There’s a lot going on. Work is busy, two kids that I parent on my own, and just the mental load of living with cancer. And the expectation that I will do something more is entirely my own doing – I don’t think anyone else is expecting anything from me. I keep telling myself that I don’t need any extra pressure and that what I’m doing is okay – I’m surviving, the kids are doing okay. But I am just surviving, I’m not living enough.
That’s also not entirely true – I am living. Last year, I took the kids to Zanzibar and we had the most brilliant time. I have many good moments to look back on during the year but the undercurrent is that I’m not amazing. I’m just okay and that’s being somewhat overly positive. I worry that maybe this is my new normal, that I’m just going to be okay. Is is the treatment, menopause – this is my new normal. And I think I don’t want that to be the answer, so I’m resting a lot of hopes and time waiting on finding that thing that will help me feel better, happier.
That hope is an important element. What happens if I actually do something to help me find purpose and it doesn’t help, that the reality is that I cannot find a purpose. The reality is that I have cancer and will likely die from it and there is nothing I can do to make myself feel better about that. Is my reluctance to “do something” and my complacency in waiting, my fear of really accepting this reality.
Is my waiting then weighing me down in some situations and in others, helping to keep me afloat? I guess I need to find a way that it doesn’t weigh me down and rather than using it to keep me afloat – stop waiting and wasting time – and live. Learn to be good with living and if something more comes from that – embrace it – but don’t get too upset with myself if it doesn’t, until I’m actually ready to accept my reality. Maybe in acceptance of that, I might actually find the thing I’m looking for that gives me purpose to this or at least ensure that I will be okay if I don’t find anything.