Notes from a Cancer Patient (Part 3)

‘Chemo fog’ or ‘Chemo brain’ is a real thing. It’s not known what causes it: the drugs; the lack of sleep; the stress; a combination of all. My oncologist (one of the nicest and wisest men you’ll meet) re-assured me it’s a thing. Hard to quantify in medical terms, but it’s a thing.

Chemo fog for me was subtle, but infuriating. I’d start a sentence and midway through forget what I was going to say. I’d feel confused about the simplest of tasks or decisions. Worst, and most challenging for me, was I really struggled to multi-task, which has always been the definition of my life. That, combined with a constant overwhelming sense of tiredness, meant that I was not running on all cylinders. In fact, sometimes it felt as though not even one cylinder was connected.

Cancer is not generally the kind of disease dealt with quickly, or fixable overnight. At best you might have an early diagnosis and need limited treatment, but don’t expect that the mental strain and worry will leave you as quick. I’ve met people who’ve come through the cancer treatment relatively quickly but are still processing it all. That doesn’t make it easier, or their experience less of a burden. At the other end of the scale I know some people who’ve had to adapt their life to live with cancer for the long-haul and have had to make adjustments to manage through this. Put simply, cancer in all its forms, sucks.

Ultimately whether I call cancer a journey or a fight (I’m still debating the right adjective) I know it’s still going to be part of my life for the foreseeable, so patience has to be right up there in my new arsenal.

Note the key word in all of this is ‘learning’.  I’m not there yet and not sure I’ll ever be able to say I am, but here’s what I’ve gleaned so far in case it’s useful for you just now:

Keep Notes

Write lists and have a notebook on you at all times. I got into the problem of having multiple notebooks (this multiplication is clearly a theme in my life – psychologists would have a field day!) but now I’ve managed to hold myself to having one faithful notebook that goes everywhere. When it is done I’ll move onto the next one. Sounds crazy but the act of using one notebook at a time has been a real act of discipline for me.

As well as writing lists and notes, write down questions you want to ask. For me this was medical, as well as work questions. It may also be worth keeping a diary or journal just now as it’s a great way of capturing how you’re feeling and also giving you something to reflect on, as well as see what you’ve achieved each day/week.

That sense of achievement is a biggie as we all like to feel we’re productive in some way. It just may be that we have to change our expectation of what productivity looks like in this season; things that we once dismissed as mundane chores will become meaningful tasks I suspect. And that’s ok.

Accept

Tough one, but accepting that going slower and learning to be patient was to be part of my new norm was probably the steepest climb for me mentally. Accepting that my day should be chunked up into defined bits of time and not have all the plates spinning at once took time. Who knew that we’d all find ourselves in a time when slowing down and dividing up the day would become crucial to all of our survival and sanity.

Ask for help – from anyone: family, friends, your team. I’m so grateful that throughout my cancer treatment I have been blessed with soo much help and support. From meals made for us by our epic church family, through to making chemo days a social outing (thanks Eilidh P) and being literally spoilt rotten by personal gifts that showed how well my friends and family know me (books, candles, hot water bottles and jaffa cakes of course being right up there).

At times I felt guilty for getting so much attention, but ultimately had to accept that it’s ok to be spoilt every now and then. And to remember that at times we get to be spoilt, and other times we get to be the one who spoils…

Simplify

We hear regularly that we should learn to say NO, but I think it’s also important to learn to say YES. I said yes to hangouts with my school friends (the most amazing and faithful group of gals you’ll meet); yes to coffee dates with friends who I’d have previously struggled to fit in as work/life was too busy; yes to wine tasting and yes to impromptu lunch dates.

In this lockdown space I find myself needing to do the same – yes to Facetime Calls and Zoom catch-ups with friends and family (even if it’s in the middle of the day). Time spent with our favourite important people is never time wasted. The fact that lots of us will get end up re-investing in relationships over this time is surely the stuff of gold.

So simplify for sure, but remember that saying YES is often the best answer.

Get Healthy

Sounds a bit obvious when facing cancer head-on, but focusing on health was so important for me: my mantra being ‘there’s lot I sadly can’t control, but here’s what I can’.

For me this included making the decision to cut out meat in my diet; continuing to exercise regularly  (albeit at a different pace) and trying to get on top of my sleep. I’m going to be honest I’ve still far from nailed the last one, so if lockdown can teach me anything it can hopefully teach me to sleep well again (any tips on that gratefully received)

Have I learning patience along the way? Absolutely.

Am I there yet? Absolutely not.

Do I have more to learn? Undoubtedly. So much.

Ax