VOL II CHAPTER 2 - The Year 2 check-up

Where the PTSD returns

I had decided I wasn’t going to get tied up in marking the number of years post-cancer that I’ve survived. We all know about the 5 year mark, which is considered to be a very big deal, but I don’t know what the data is behind that. I did research and found out that a significant number of cancers come back within 2 years, so the 2 year check-up is significant. But I researched my own cancer and I saw something that said it often comes back in the 5-10 year timeframe. So who knows.

It seemed to me that pinning my peace of mind to a particular date wasn’t going to help me live my post-cancer life. I entirely understand why it would help others, so it’s not a criticism of anyone. But for me - I don’t feel that I can be sitting here with bated breath waiting for an annual check-up. I feel I have to be living - today, now.

So I decided. We’re not going to make a big deal of these annual check-ins, they’re just a thing.

I’m really big on being conscious of our stories and whether they work for us or not. I talk a lot in the book about how important it was not to have a story about the hair coming off - how being home alone, in lockdown, and choosing not to have a big story about the hair helped me to navigate quite a difficult moment.

But a few weeks before my 2 year check-in I noticed the energy in my body got very unsettled and my anxiety was worse than normal. So it looked like the story that I didn’t want had got a hold of me anyways. 

When I did my mammogram and ultrasound, I came home from the hospital feeling whole-body sick and with a hideous headache. I had to go to bed and put a sheet over my head and call it a day. I felt it was a bit of an over-reaction to a minor procedure. But in retrospect it was probably an indication that there was a lot more going on.

When I saw my surgeon for the results her first comments was the scans look great, it’s all good. Relief. Then she does the manual examination and she starts talking about how it’s a bit lumpy in there, and before I know it I’ve got a needle going into my boob (aspiration) to take some samples, and now I’m being booked in for an MRI. 

Because I was still trying to be blase about it, I didn’t ask the obvious question “are we worried here that I have more cancer?”.

And so I leave the appointment, booked in for an MRI, with a sore boob, and now I have a few days where I’m all over the place. I’ve gone straight to being sure the cancer has come back, I can feel it, for sure it’s come back. I feel sick, I can’t concentrate on anything, I lose a whole week of productivity, I’m crying randomly. I’m feeling out of control. It reminded me how I felt in the first few weeks after I was diagnosed, where it’s wild emotional territory - a different emotion every minute. 

And all this happened after I had consciously decided that I wasn’t going to get attached to the story of this moment. 

I go for my MRI scan and by now I’m so ungrounded, I get really scared and anxious. And even though I’m undressed and all the way into the MRI I can’t do it. I tell them you have to get me out of this machine right now. I put my clothes on and I book in for the full sedation option next week. 

In the car on the way home I become very quiet and subdued. Which triggers the failure story - how pathetic that I can’t go in an MRI. It’s only 10 minutes. You should have done it. And on and on.

I wake up the next morning feeling exhausted and useless.

So I ask myself what’s really going on here? 

I realise that this whole thing - the idea of the cancer coming back, and being back in the hospital 3 times in one week - has triggered the PTSD I have from the last 2 years. I’ve always felt embarrassed calling what I’ve got PTSD, but that is what it is, so there you go. On one level I’m fine, but my body, my central nervous system, remembers how awful the last 2 years has been, how sick the chemo made me, how lonely and scared we were. She doesn’t want to go back to having cancer again, she doesn’t want to go back to hospitals. I have a small voice inside saying I don’t want this, I can’t do this, I don’t want cancer any more, I can’t do hospitals, don’t make me, I don’t want to, I’ve had enough. My central nervous system is having a massive reaction.

I also realise the fear of death has been triggered, and having sat with that for such a long time last year (covered extensively in the book) I thought I was at peace with that. Obviously not as much as I had thought.

Because this cancer journey goes on for years, you have to regularly revisit some of the work you’ve done to stabilise yourself. You don’t get to tick it off and say it’s done. I had to go right back to some of the basics again.

• You have to love all of your human self that’s trying to so hard to navigate something extreme and for which there is no life practise. You need so much self-compassion in these moments, you have to love yourself as hard as you can.

• The gift of cancer is realising how awesome it is to just be alive. So we have to try to love even the days that suck. Otherwise what we’re doing is living our life with conditionality - I like this day, because I like what’s happening, I don’t like this day because I don’t like what’s happening. But that’s not what cancer teaches you. Cancer teaches you there’s an end to this thing called life, and that you must try to love your whole experience of life: you have to love your fear, your anxiety, just as much as you love the days that you’re getting what you want. You have to love all of it.

• And then I had to sit with death again. I reminded myself it’s ok to die. In fact the more I feel into it the more I feel that there is a part of all of us that that’s eternal and that death is probably nothing to fear, and that there might be something on the other side. I certainly don’t feel that death is the thing our culture tells us we should be terrified of. So I just sat and gently reminded myself that if we die. It’s ok. All we can do in these moments is just keep saying yes. Yes to life. Yes to death. Say yes to all of it. in saying yes, rather than struggling with it, that’s how we find our peace in these moments that are intensely challenging.

Love as always 🌟