How to live with a brain tumour 733 days in

That’s right – three days ago marked precisely two years since I first heard the words brain tumour. It was my tumour-versary if you will.

I’m late getting this out because I’ve been recovering from a seizure (which means spending my days watching Come Dine with Me re-runs from a horizontal position) – quite apt in many ways.

I’ve written about that morning many times before (see here, and here if you’re interested). But, nonetheless, I thought I’d share my latest reflections on this funny old thing.

Matt and I flew to Lisbon the day after we got the news. It was already booked, and there didn’t seem to be any real reason to miss it. After all, I was no iller than I’d been the day before – just better informed.

As we savoured delicious Pastel de nata, walked along narrow cobbled streets, and admired the pastel-hued tiles on every corner, I remember feeling as though I had a new sense of purpose. The sky looked bluer, the sun felt warmer and my boyfriend had never been more perfect.

I drank it all up because I didn’t know then if I would be here now. Since I am, (thanks universe, and science!) here are a few things I’ve learnt.

Remember that death isn’t always imminent

It’s easy to assume (when you hear the words brain tumour) that the end is nigh. In the beginning, I really wanted to know how long I might have left. I thought it would enable me to live differently. But since I was never able to pin it down with any of my (clinical) team, I’ve gotten used to living with uncertainty. So much so, that I’ve come to realise that it’s actually OK. Life’s all the more valuable for it. And, because after all, none of us really know, do we? At best it’s a guesstimate.

Statistics aren’t the friend you need

On finding out about your tumour you’ll cry, and then after sharing the news, you’re going to hit up Google.

Before long, you’ll find some facts – statistics – that appear everywhere. You probably already know all about them, they go something like this.

The biggest cancer killer of adults under 40and “Less than 20% of patients will survive for 5 years or longer. They are shocking, sad and bleak and you will worry that they almost certainly apply to you.

The statistics are accurate of course, and sharing them serves an important purpose. They make headlines, raise awareness and influence those in power to invest funds in vital research. But, how much do they actually mean to me or you? It’s not the statistics that keep you up at night, it’s thinking about your husband, mum or the fact that you might never get to have children.

There are over 120 different types of brain tumour. They can grow in numerous parts of the brain. They are rarely heterogeneous and are as individual as each of us. I think remembering that helps keep the statistics in perspective.

F*ck it lists might be overrated

I came back from Lisbon with weighty brain tumour baggage and lots of ideas about all the things I’d want to get done if my days were numbered. I also put a big wash on, painted my nails and went to work the next day.

Until treatment starts, lots of things continue as normal if you want (and are able) to let them.

I’ve learnt to spend more of my time doing things I love – like writing. Not ticking off items on lists, but taking the notion that life is precious (it really is!) into my everyday. Maybe you’ll want to get started on that hobby, reconsider your work-life balance or quit doing things you secretly hate.

Find a way to manage hair loss

I ‘braved’ the shave, and didn’t look all that bad. In fact, I actually enjoyed my time as a baldie.

Some people feel cold, exposed, and unlike themselves, and you’ve got to make this unfair thing you’d never choose somehow work for you. Cold cap, get wiggy with it or go down the chic headscarf route. There are loads of options (and amazing people, and charities offering tips and tricks).

Look for places to get support

You might need to talk. Whether that’s with friends and family, or in a confidential setting. There are organisations that exist specifically to help. Some examples include Brain Tumour Support (they have a helpline and run support groups across the UK), Brainstrust, Maggies and Macmillan.

Identify your ‘good vein’

You are likely to get very familiar with the “sharp scratch” and your arms are going to come into contact with their fair share of needles. If you’re lucky you’ll quickly identify your best veins – maybe you’ll be blessed with lots, but at the very least, one good one will do. Having a reliable vein can take the angst, fear and pain out of lots of procedures.

My ‘good’ vein has been a godsend, making tidy work of every blood test and cannula thrown its way. All without *much* fuss. I really can’t thank it enough.

If you are living with a brain tumour what have you learnt along the way? 

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Sar x

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4 Comments

  1. Eleanor Capes
    October 11, 2018 / 8:59 am

    You are an inspiration Sarah! My niece Rachael has the brain tumour. She was diagnosed 14 months ago after a seizure, had surgery, radiotherapy and is now mid-way through her chemo. There are so many things I want to ask her or talk to her about but I don’t because I’m worried about upsetting her – she’s the daughter I never had and I’m very scared about what the future holds. From what you write I’m guessing she’s a similar age to you (she’s 31) and her thoughts and concerns must be similar to yours. Your writing helps to put things into perspective and indirectly, answers some of my questions and helps me to understand more. Thank you Sarah, take care x

    • SarahGaffney
      Author
      October 13, 2018 / 3:15 pm

      Hello Eleanor, I’m so glad to hear that my blog is helping in a very small way. I completely understand what you mean, and am sure that my family often feel the same way. We are indeed the same age :-). Sounds like you are a great support to your niece just by being there Xx

  2. Brian Rockell
    October 11, 2018 / 8:53 am

    Here’s to the next 733 days Sarah x

    • SarahGaffney
      Author
      October 11, 2018 / 5:49 pm

      Thanks Brian, Indeed!

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