Notes from a Cancer Patient (Part 4)


17 Apr 2020

Grief is Real


I used to think grief was simply to do with death. It’s not; it’s to do with loss.

And loss is so often hard to articulate. Just now we’re all grieving, personally as well as collectively, for so much lost stuff.

There were weddings planned, projects organised, holidays booked, social get-together’s in the diary, end of school parties, exams prepared for. Work lost, money lost, time together lost, identity lost.

Stepping Stones

There’s also grief that’s connected with anticipation. We know there’s going to be a mountain to climb, but we have no idea what the mountain will look like, how we’ll go about climbing it, or even when we’ll be allowed to climb it. All those questions about exit strategy? We have no idea.

Coming to terms with having cancer, I found the concept that there are stages of grief (between 5 and 7 depending on your persuasion) really helpful.

There were recognisable stages that I could start to navigate. I’m sure these stages happen in different ways for different people, but they are real nonetheless. And they are definitely real at the moment.

Rather than think of the stages of grief as a map, think of them as stepping stones. The stepping stones aren’t always in a straight line, and sometimes you have to go backwards to go forward.

Stages of Grief

1. Denial

Seriously a stupid virus? We all heard those phrases in the early days, in fact maybe we said some of them ourselves: it’s not that bad; most people aren’t that sick; it’s just happening in China.

I felt like this when I was first diagnosed with cancer: it can’t be that bad I don’t feel ill; perhaps the ‘suspicious’ bit is really not that suspicious; maybe the extra tests will show it’s all disappeared, or was never there in the first place.

Worse than my own denial was that when that denial was placed upon me by others, although they thought they were being helpful, as we all so often do (me included)…

You’ve got a 92% chance of survival, so you should feel re-assured. Breast cancer is a good cancer to get.”

Thanks. I think. I’m not sure about you, but I don’t find stats that helpful. Because for all the good stats there are lots of bad stats. And as I discovered the type of breast cancer and the grade, and the fact that it had spread to my lymph nodes those stats changed a little. So, what did that mean? Should I worry more, or simply ignore them?

Anyone else feeling over-whelmed with the numbers and the stats at the moment? I am and although I’m largely ignoring them, I know we can’t ignore them on a national scale. But I also choose not to let them consume me and I’m hoping that smarter people than me know how to make sense of these stats.

“My Mum had breast cancer and her life carried on as normal”

I’m pleased for your Mum, really I am. Sadly my cancer treatment rather intruded on my life. I tried to let it not and at times I think I succeeded, but at best I think it was a ‘new normal’ for me. Anyone else heard that phrase a lot recently?

The truth is the denial phase of grief quickly fades when reality sets in and I think we’re pretty much there already with this virus. Move over denial, we know this is for real.

 

2. Anger

‘It’s not fair’ would be the rallying cry here. It’s not fair I had lots of great stuff planned for this year, this was not part of my plan. It’s not fair on my family. I’ve worked/trained/studied so hard and it’s not fair that doesn’t count anymore. It’s not fair on everyone who is going to suffer through this, from those on the frontline, to those loosing people they love.

It’s absolutely horrible and none of it’s fair.

The truth is I’m not a great believer in the “it’s not fair” mantra, mainly I think because as a child I had the phrase “well tough, life’s not fair, get on with it” drummed into me. And actually I do still hold to that . Life so often doesn’t seem fair for many people so I don’t find fairness a realistic measurement.

I think we’re also seeing a lot of anger in the judgement towards others and that makes me sad. You know those stories in the news of people being verbally ear-bashed when they’re actually breaking the rules, or the endless debates online about what exactly constitutes essential shopping (answers on a postcard)?

Anger definitely ends up pointing us towards judging others and that’s never a healthy place to go. Let’s try and avoid that where we can.

The antidote for anger? Different for all, but for me getting exercise, praying, reading, dancing madly and singing are things that work (with the latter, best to not be within earshot as I’m definitely holding my own unique tune)

Oh and within lockdown water fights in our garden have become a bit of a thing… as the kids have rediscovered the hose. So yes I have found myself agreeing to a ‘let’s soak Mum water fight’. I’d be lying if I said it wasn’t fun.

 

3. Bargaining

After anger we get to the more desperate phase of grief, bargaining. Please God if I do this/don’t do this then help me/give me this. Ever said that? It sounds childish when you say it out loud. Bargaining, pleading. We know it’s not always rational and yet we all do it in grief, whether in our heads or out loud.

In the middle of the bargaining phase is where guilt creeps in. Was it something I did wrong? Seriously I have been round the houses on this. Did I get cancer because I didn’t get enough sleep? Was it because I was on the pill for too long? Was it because my diet wasn’t as good as it could have been?

I think there’s a lot of national guilt around and I think we’ll see more of that. Did we not act soon enough? Were we slow to respond? Should we have closed the schools earlier? Should we have closed the borders quickly as other countries did?

Truth is we have to find a way to process all of this and then choose to put it aside, as it doesn’t help us personally move forward.  Bargaining is the phase of grief that lives in the past and if we’re not careful we can get stuck here. What I found most helpful was focusing on my treatment plan as that felt like a forward-looking, fact-based reality I could hold onto. Anyone else like a plan?

 

4. Sadness or Depression

I just don’t know what to do now. I feel so overwhelmed with where to start. This is the depression phase of grief; perhaps the one we always assume kicks in first – it doesn’t always and sometimes it sneaks up on you.

For me this felt like my foggy stage over the last few months (see my pervious post on chemo fog) It was horrible and made me really sad as it made me feel a lot less like Alie than I used to be.

I genuinely hated that I had lost a bit of me and I wanted to cry that the cancer was controlling so much. Worse, that the treatment to cure the cancer was the very thing that was stealing my health from me. I should have been grateful and I felt guilty for complaining as I had no right to complain.

During this stage I found myself physically talking to myself. “Alie just get up. Do it now!” It helped me a lot.

I forced myself to be up and breakfasting with Niels and the kids every single day during chemo. Sounds simple, but it was so hard. But I achieved it (bar one Saturday morning in December where a simple cold floored me to the extent that I actually stayed in bed and watched Inspector Morse – yes it was that bad!!!)

Breakfast with the family every morning made all the difference in the world to me. Even if it meant I had to crash later in the day.  I think we’ll all find ourselves having spells like this if the lockdown goes on for a while. Days where the motivation’s gone and the sadness threatens to overwhelm. Maybe on days like this it will help to talk/shout/kick yourself? Because keeping going is the most important thing. Start with putting one foot in front of the other and that’s as good a place as any.

 

5. Acceptance

This is where we find some kind of control to do the stuff we can do: work from home, tackle tasks we’ve put off for ages, find a way through this ‘new normal’. I think too in acceptance comes the realisation that it’s ok to ask for help and not to try to do everything yourself; you don’t have to keep smiling when you feel like your world is crashing in around you.

Sometimes it’s ok not to smile. Sometimes it’s ok to cry. And for those times make sure you put good people around you (sadly a lot of this will need to be virtually at the moment), who can lift you and support you.

I suspect we’ll get to acceptance at different stages and then fall back to one of the other stages again. Grief  doesn’t just go away and stay away.

Some of the losses we feel will be afterwards when life starts to return to something that we recognise as normal. Let our acceptance be that we need to keep on accepting and then adjusting and then maybe accepting again.

 

The Cycle

Grief  is always cyclical, never linear. We will go round in circles with this stuff at different points. There will be good days and bad days. In fact scratch that: there will be good hours and bad hours. You don’t just get over loss and move on. That’s not how it works. Some of the things we’ve lost with never fully replaced. There will be good in that and there will be genuine pain in that.

As we navigate grief we need to learn to be kind to ourselves and be gentle with others. None of us will get this 100% right all of the time. But we can all help and support each other.