Taking stock at the halfway point of my treatment
On Friday May 8th, I took my last dose of Capecitabine for cycle 4, bringing me to the halfway point of my treatment (as long as I don’t have any more deferrals and my bloods behave themselves!). To me it felt like a huge achievement; a milestone worth celebrating.
Sadly, we were still in isolation so I could only share this moment with my Steve, but we marked it in our favourite way: with food and board games. It was a little grey and rainy, but we lit a fire and sat outside, protected under our new ‘half way’ umbrella and enjoyed our first barbecue of the year. We cooked lamb with chimichurris (an Argentinian salsa verde), and finished up with magnums and Percy Pigs for desert. I even managed a little prosecco.
And what better time to reflect on my cancer experience - and what it has taught me - so far. I actually started thinking about this a little while ago, when Trekstock asked me to write a short blog post for their website, offering tips and advice for surviving isolation. I realised that, in many ways, combining isolation and chemo had actually made it all a little easier.
I wrote about how I had been using my time in isolation to learn to be still; but when I really thought about it, it is cancer that has helped me to do this – being isolated on top has just made it easier to practise.
All my life I have been a ‘rusher’; too many things to achieve and not enough time to achieve them in: I was forever trying to fit too many things into my day, too many things into my weekend. So much so that I was very rarely able to just sit and enjoy stillness; I even stopped being able to read for pleasure – something that has been precious to me since childhood.
And then when I was forced to face my cancer diagnosis last September, I completely lost the ability to focus on anything at all – my ‘rushing’ got even worse and perhaps, even more manic. Because I couldn’t focus on anything, I tried to fill my day with tasks and chores and physical challenges to distract me – only they didn’t, not really: my brain was still constantly going at a million miles an hour. What if? What if? What if?
And then following my surgery, when I was unable to distract myself ‘physically’, I turned to social media, online news and TV. Only it just made my ability to focus worse.
So I decided something needed to change and I began to focus my energy on taking care of me: my body and mind. And finally, I learnt to be still: I was even able to read again.
I started by deciding that every day I should get dressed straight away. When you’re ill, or have no reason to jump out of bed and get dressed, it’s easy not to: and I found that this made me feel really bad about myself. Looking back, I also think it exacerbated some of my chemo side effects too. Now, no matter how awful I feel, I try to get dressed and do something active everyday – even if it’s just stretching or showering or hoovering one room…and it really does help. It helps me to focus on what I can do at that time, and not what I can’t. Which has a knock on effect on my self-confidence.
Now, apart from my really bad chemo days, instead of sitting about in my dressing gown for hours, flitting through social media aimlessly, I head straight out for a dog walk, or more recently a little run, using the BBC’s Couch to 5K app – this means I have to get dressed, and then shower (during chemo, bathing can really zap your energy; it becomes too easy to avoid it completely, which only adds to the general feeling of apathy and negative milieu). I have written in detail about my life before cancer, in which I was a keen runner (see Part 8: Let’s talk about Poo Baby), and also about how getting back to running (albeit at a much slower and less intense level) has been a huge boost to my confidence (see Part 10: Let’s get Physical), but I feel like it is also improving my quality of life and the way my body is coping with my treatment. I am even undertaking a virtual 34 day ‘Keep Calm and Keep Moving’ challenge to help motivate me during my bad chemo days and to raise money for Trekstock - you can read more about what I’ve been up to and sponsor me here.
My next challenge was my brain: how could I get it to stop flitting from thought to thought, scenario to scenario? So I looked to yoga and meditation. I found plenty of Yoga videos on Youtube – I particularly enjoy Yoga with Adrienne. I also attend a live, virtual Physiofit class every Monday and I downloaded the Headspace App (thanks to Trekstock who gifted me a year’s free subscription).
I had started attending yoga prior to my surgery, so I was already aware of the power it had to force me to stop for a while and tune into my body, but once I left the class I would just return to my old ways of over thinking and catastrophising. So Headspace was initially a bit of a revelation. It builds your skills up very slowly, helping you control invasive thoughts for longer and longer periods.
And of course I started writing this blog. Not only does it help me get my thoughts out of my head – but because I have to then put them into some kind of order that is easily digested by others - it has helped me feel like I have some control over what is happening to me as well.
I also learnt, that for now, it is ok to put me first. So my days now focus on keeping me healthy – and I finally feel confident, that this is the way it has to be, at least until the end of my treatment. Because if I don’t keep me healthy, I am no good to anyone else. Chemo has so many weird and wonderful side effects (for more on this check out Part 9: I’m all about that Chemo) that navigating very normal tasks you once took for granted can become both a physical and emotional challenge; so when you feel well, when you have the energy – be that physical or emotional – you need to prioritise the things you really want and need to do: for you.
I struggled with this a lot initially – I felt a lot of guilt when I didn’t have the energy to answer or make phone calls for example – but I have finally found peace with it. And it probably sounds strange to people when I try to explain that despite being in isolation, my days are actually quite full - full of the things I want to do, for me, and also balanced with space and time to be still. And to me, right now, these things are sacred: my exercise, my yoga and meditation, my writing and reading, my music and cooking, being in my garden and pottering about my house; I have also started learning French so that I can communicate a bit better when we return to France: when this is finally all over (isolation and chemo), Steve and I plan to head off on a motor biking holiday to the South. I also hope to go back my Mum some time; she has been learning French too – far longer than me – and I think we would have such a lovely time pottering about together, practicing on unsuspecting locals, eating fromage and drinking red wine – or should I say: manger du fromage et boire du vin rouge? I don’t get to see her much, so thinking about being able to do this with her is keeping me motivated.
And I find, more and more often, that I don’t want to add anything else into the mix – I don’t want to end up rushing again: I don’t want to go back to that time when I tried to fit in too many things and lost the ability to be still.
Sadly, I am more than aware that I will not be able to live like this forever. Eventually, probably sooner than I am ready, I will need to start easing myself into a return to work. But, I refuse to go back to that version of me that was never still; that version of me that was forever trying to fit in too much, that was perhaps doing things that I didn’t enjoy, things that actually made me feel incredibly anxious all the time because I didn’t know how to step back: because I didn’t know how to say no.
Cancer has taught me that life is brief and unpredictable and precious; we never know what it will throw at us next. So, from here on in, I also refuse to do things that make our brief time more difficult than it has to be. I refuse to return to counting down days to the next weekend or the next half term and wishing my life away. Because every day we have is a gift that should be cherished and looked forward to - not dreaded.
My life will never be the same again. Cancer will forever be hanging over me – every twinge, every slight change in bowel habit will leave me worried – because it can, of course, come back. I developed cancer for a reason – treating this bout is no guarantee that it will not return: in 3 years, 5 years, 10 years. Currently 65% of people with stage 3 bowel cancer like me, survive for 5 years which is great, but it could be higher. And this statistic reduces for every year beyond that – it is also well documented that once you have had cancer, you are far more likely to get it again. And knowing this has changed how I see my future – because every year, every month, every week, every day, is sacred.
For lots of reasons I am behind most people my age in terms of life’s milestones. I have a lot that I still want to do and achieve, and in many ways I face a greater challenge in achieving those milestones than other people. Cancer has already stolen a year from me, and it will steal more. My oncologist has said that I should not get pregnant for 2-3 years post treatment. I will be 37 in July. My treatment is due to finish in August. The NHS will only fund IVF until I am 41. Maths isn’t my area of expertise, but even I can see that this doesn’t give me a lot of wriggle room.
So yeah. Cancer has changed my life. It has changed my priorities and it has definitely made me stronger. I am learning to stand up for myself – I will not be bullied or made to feel that I am in any way deficient; I am learning what is important: time and space and the people I love; and I am also learning how important it is to not only be still, but to appreciate the things in my life that are good – and to celebrate them.
The irony is, that despite cancer, in many ways I am actually incredibly happy – and happier than I can remember being my entire adult life. I am loved, for me and who I truly am. And the love I have is genuine, gentle and un-controlling. For the first time I see a future that is happy and free from the niggling doubt that it could have been something more. And maybe I have cancer to thank for this, or maybe I am just lucky that cancer happened now, and not 5 years ago…
I don’t know.
This morning I attended the virtual funeral of Debs, a dear friend of my Steve and his family. I only met Debs a few times, but when I did, her warmth, vivacity and joie de vivre were difficult to miss. And as Steve and his family had spoken so fondly of her so often, I always felt like I knew her better than I did. I know they will all be missing her terribly and I hope that soon they will be able to get together to say goodbye and celebrate her life in person.
Deb’s cancer rollercoaster was brief, yet ultimate. And this makes me at once even more aware of how lucky I am and how important it is to live your best life and not take a minute for granted.
This is the second funeral I have attended this year thanks to cancer. I know I’ve said it before, but cancer does not discriminate, it does not care about Covid-19 or anything else that might be going on in the world. And it does not always attack the people who fit into the risk factors. Debs certainly didn’t. And neither did I.
So yeah, I guess what I have learnt, is to not take anything for granted and that we can’t afford to waste time doing things we don’t love.