What cancer taught me about living with uncertainty

Me Post OP

Photo: me, a few days post op, modelling my new glasses. This is the level of excitement possible while sporting fresh stitches

I’ll kick off with a bit of context. I was diagnosed with Endometrial Cancer in 2018, although the diagnosis was a very long time coming. Women, I cannot stress enough how important it is to self-advocate. If you feel your body is behaving differently (yes I am talking periods) push the point with your GP. If I’d been more confident and assertive in my concerns, I could have had a diagnosis much earlier. With cancer, earlier is always better. Although, I was lucky to have a grade 1 cancer, or as I like to call it the couch-potato of the cancer world, so while it had spread further than my doctors would have liked, I am currently in very good health and, as far as I know, remain cancer free (everyone please join me in touching wood, thank you). It is 2020, there is a pandemic happening, and I am well.  I’m feeling pretty grateful all in all.  A big shout out to the wonderful team at St George’s in Tooting, I hope they are getting the PPE they need to carry on being amazing in safety.

So that is the cancer context. An additional piece of useful exposition is that I went freelance in 2016, 3 months before the Brexit Referendum. So my dive into the arms of uncertainty started before I found out I had cancer. What shifted, once I was diagnosed, was my relationship with that uncertainty. In fact, it is an ever evolving relationship. Here I am, a freelancer with no active paid projects at the moment, and a very uncertain pipeline, and I’m feeling happy and grateful with life. I am living in isolation, like all responsible non-key workers, with two cats, who are adorable but rubbish conversationalists, and I am not climbing the walls or binge watching Netflix 24/7. I am functioning well within the parameters available to me, and no that doesn’t mean I’m being hyper productive either. I have not learned Portuguese (must listen to those CDs), mastered the guitar, or finished my novel.

What I am witnessing, from a socially sensible distance, is that the world around me has been plunged into a state of uncertainty that is all too familiar to me. People I care about are suffering. The communities I’m part of are fearful for their futures. I can’t fix that, but I wanted to take this opportunity to share what I learned by going through a turbulent period of uncertainty in my own life, because cancer can feel like the end of things. Even if you end up with an optimistic prognosis, there are long periods of time where people just can’t tell you that it is all going to be OK, because they simply don’t know. Cancer takes you on a journey you didn’t choose, and that you have little control over, with no idea of what the destination will look like. Sound familiar?

So I thought I’d take the opportunity to share my learnings from that experience, as they are helping me maintain my calm and good humour during this pandemic. Even cancer has its upsides.

So here are my personal dos and don’ts of living with uncertainty:

1.  Stop catastrophizing. Catastrophizing can be ‘fun’, in the way poking a bruise is fun, but it really isn’t helpful. It is junk food for our brains and emotions. If you find yourself envisioning a doomed future, take a minute. Stop. Breathe. Return to where you are now. The reality today. Are you OK now? If the answer is yes, good, you are doing well. If the answer is no…

2.  Asking for help is great. It is so much easier to help others than it is to ask for help. This was one of the toughest lessons I had to learn, and one I still need to work on. Giving people who care about you the opportunity to help you, is a beautiful thing. Suck up the discomfort. Try not to become defensive. Work out what you need. Talk to your friends and/or family about those needs. In my experience, if people can help, they will. If you don’t have that in your friendship or family circle, look to your council and community. You may have noticed in the news that there are lots of grumpy volunteers out there who aren’t being given enough to do. If that isn’t a sign that in uncertainty, people need to help others, I don’t know what is.

3. Helping others is also great. A remedy to feeling helpless, is to help someone else. I’m a telephone befriender and shopper for my local Age UK, and it brings me so much joy. For those of you frustrated by the lack of opportunities to help, have you tried your local council? Many are coordinating volunteer needs through charity partners. If you live in Merton, I know for a fact that Age UK Merton needs more volunteers.  Acts of kindness are scientifically proven to increase your own well-being.

Neighbour cookies

Photo: The gift of Christmas cakes and cookies from my neighbour. My operation was in mid December. Not sure if they knew I was sick, but this was a lovely act of kindness by them.

4. Talk to each other. We are social creatures and this period of isolation hurts us, because we get a boost from interacting with others. When I was sick with cancer, I was often tired and it would have been so easy to cut myself off from those that wanted to visit me. I’m glad I didn’t. I had some beautiful afternoons enjoying the company of a friend I might otherwise not have seen for ages. I know we can’t do that now, much as I would love to have my friends over for tea, biscuits and a good natter. But technology does allow us to connect remotely. While it is a different experience from catching-up face-to-face, that doesn’t mean it has to be a bad thing. Saturday morning I’m having coffee and a chat with two lovely friends who live in Glasgow and Sydney. This situation has stripped the limitations of geography out completely. Is there someone who lives far away who you haven’t caught up with in a while? If nothing else, we’ve learned the technology exists to let us have a lovely chat with anyone who has internet access, anywhere in the world. People we might not have seen in years because they are far away, and we were busy going out. We can’t go out now, but we can replace the emotional boost of time spent in the company of close friends, with the thrill of catching with friends or family we rarely see because of distance.

5. It is not a competition. One of the most frustrating side effects of having cancer, is people stop sharing their problems with you. They dismiss them as “not cancer”. I’d often have to push people to open up, and did overuse the phrase “it’s not a competition”, to the point that I could adopt it as my catchphrase. We will all be having different experiences of this situation. Some will still have jobs, but will be haunted by the fear that they are going to lose them. Others may have been made redundant, and feel lost and hopeless about their future options. Others may be sick with the virus, and their focus has shrunk to catching their next breath, while their loved ones just want them to be well again. It is not a competition. Those that we think are the most “secure” – ie healthy, working, in a happy relationship, in a home with a garden etc may be just as anxious as those who don’t know where their next paycheque will come from. So while point (4) is about talking, the focus in (5) is listening. Sometimes people just need to be heard. You don’t need to fix their situation or point out their blessings. Offloading our fears to a sympathetic and non-judgemental ear is its own form of therapy.

6. Focus on what you can do and not what you can’t. Again I am NOT saying we all need to be super productive and creative in this time. Let go of the knee jerk reaction to do stuff that feels normal. Stop trying to be busy. Some of you may still have a lot on. For example, those working from home may now face the challenge of making sure their work day doesn’t become their whole day. During my cancer recovery period I was working on 2 remote projects. I actually don’t think either of my clients knew I had cancer. Wow, that only just occurred to me. But it just didn’t come up. They knew I was going to be unavailable for a few days (even I stop for surgery) but the work itself, I could do from a laptop in bed or on my sofa. My brain was working fine and, the projects themselves were not excessively time consuming. I delivered them on time, and my clients were happy with my work. These were on-going projects that were coming to their natural conclusion. Once they were done, I started to worry about getting more work. I couldn’t walk for more than 5 minutes, and needed lots of sleep. My online searches just kept reminding me of my limitations. So I stopped obsessively looking at linkedin and other online job/project sites. They were making me miserable. Once I shifted my attention to what I COULD do, life opened up. I became really interested in healthy eating, experimented with recipes as I got stronger and could spend more time in the kitchen. Read loads of interesting books about nutrition, health, psychology, behavioural science, writing, brand planning etc. I fully geeked out. Once I was fit enough to be out and about again, a project found me. Someone I’d freelanced for before reached out. I had to set my limits (no rush hour travel being one of them, that would have wiped me out for the day), but it was a great project, with a lovely team of people, that came at just the right time. I’m not saying be fatalistic about things. I’m just saying don’t focus on your limitations, focus on the opportunities and the things you can do, because there ARE opportunities if you have the willingness to find them. All that reading on behavioural science came in really handy on that project.  Lean into what interests you if you find you have time to fill. It will make you so much happier than dwelling on the things you can’t do.

7. Listen to your bodies and take care of them. For a time, I was very cross with mine for letting me down, and getting cancer. Also being housebound and limited in movement, my spine felt like an ever tightening pretzel, and my aches developed their own ecosystem of sub-aches. My biggest regret from that period is that it took me too long to listen to my body. Now, unless you have the virus (wishing you a speedy recovery if you do) or other health conditions (wishing you well and pain free), you are a healthy person trapped in an unsustainable and unhealthy lifestyle right now. Yes, I know social media is full of toned people getting even more toned during lockdown. Good for them. Now, for the 90+% that aren’t hardcore fitness addicts, it has become very important to listen to our bodies. We need to look after them, not go to war against them. Realistically many of us will not be walking enough. Our bodies will be tense. My advice, as someone who is not a physio or personal trainer, is to make time to stretch every day. Check in, work out where you feel tight and look on youtube for stretches for those areas. There will be something relevant for you. This could be as little as 10-20 mins a day, but trust me, you don’t want to wait until you’ve turned into a pretzel to do something good for your spine and body. And feed yourself healthy food too, while you’re at it. I’m not saying throw out the biscuits, just recognise that they don’t provide your 5-a-day. Nourish yourselves. If you find you’ve been sitting for a couple of hours, get up, put on a song you love and dance! That is a mood booster in a tiny nutshell of time. You can do it. If you don’t want to disturb the people you live with, put on headphones, but if they’re being grumpy they could probably use a dance break too.

Healthy Eating

Photo: this was taken during my super healthy eating phase of recovery. That salsa verde is delicious! Why haven’t I made it in ages? Must rectify that

8. Don’t forget to laugh. I found certain aspects of my cancer experience hilarious. Which did disconcert people, I’ll be honest. But just because it could kill me, didn’t mean I had to be po-faced about it. I laughed. A lot. From the collection of bruises on my thighs from the twice daily injections I had to give myself (I got better at it over time, but some epic fails to begin with) to traumatising phlebotomists with my awkward veins, I had loads of things that made me laugh. Coronavirus is no exception. You decide to jump on the bread baking bandwagon and your loaf comes out looking like a blackened clog? Laugh. Your cat has puked on your favourite armchair, while you are writing about the importance of laughing at life? Laugh. You miss a friend. Call them and laugh. There is so much potential humour in the insanity of our lives right now. It is OK to laugh. We don’t need to be worried and serious all the time, it isn’t helpful. Find those small, ridiculous things that pepper all our lives and laugh at them. No-one else needs to find them funny. Sometimes it is even funnier if they don’t.

9. Educate yourselves but don’t obsess. Once I knew what type of cancer I had, I hit the internet. I looked up the NHS information about it. I also looked for other scientific studies and advice from medical authorities around the world. I did NOT look at message boards, or forums. I didn’t need other people alarming me about what could go wrong. And that is what you find in those places. I just needed to know the stats, because that is how my brain works. Fortunately, in my case, those stats were reassuring. I learned what I needed to know and I moved on. I had informed conversations with my specialists and I felt empowered to make the necessary choices about my care. Information can be empowering. It can also be anxiety inducing and lead to choice-paralysis. Engage with the information out there that serves you. What is useful to know? Focus on that and don’t waste time with the rest. Ditto with social media. There are some really useful and nurturing communities and people on social media. There are also vampires out there that will suck you dry of hope and positivity. So don’t avoid social media, it provides a useful form of connection. Just know when it is helping, and close it when it isn’t. Curate your news and social media experiences to make sure you are feeding yourself the information and connection you need, but avoid triggering unnecessary anxiety. Now is the time to focus on the things we need, and the things we can change, everything else is optional.

10. Accept that what is happening is shit. This situation is an unhealthy one. It is putting a lot of pressure on our mental health, no matter who we are. Whether you find yourself with more time, or less time as a result of the pandemic, gift yourself the space to heal. Accept that it is normal to find this situation uncomfortable. Don’t resist how it is making you feel. Acknowledge the discomfort of uncertainty. It is crucial to recognise that as a whole we are experiencing a traumatic event. It will change us all, and fighting that isn’t helpful. So give yourself the space to recognise how you are feeling and to accept that it is a valid response to what is happening to you. Don’t judge yourself and accuse yourself of “failing” in some way. Remember, this is not a competition. I could write a whole separate post on self-care techniques, and maybe I will if there is a demand for it. Let me know. But for now, try and be kind to yourself. You are doing the best you can in a strange situation. Could I have “done cancer” better? Probably. But how stupid and crass does that question sound?  So could you be dealing with a global pandemic better? Unless you are a member of the government, or in some other way responsible for our infrastructure and recovery, that is a pointless question. My question to you is, are you looking after yourself? Are you being kind to yourself? If not, please try to be, self-compassion can be so powerful.

11. There is no going back to normal. This is a ‘before and after’ situation. The sooner we accept that, the happier we will be. Cancer changed my life. I am grateful it did not take my life. I am also a much better, stronger, more grounded person because I went on that cancer journey. Just to be clear, that doesn’t mean I want to do it again. But if I do have to, so be it. There are things I can control and things I can’t. I choose to focus on those I can. I distrust anyone who speaks with certainty about the post lockdown world, and what it will look like. But I choose to look forward with hope. I think if more of us did, our chances of making our ‘after’ beautiful increase. Don’t get me wrong, things will be tough. That is probably one of the few certainties right now, but we were never promised easy lives. Change, despite being a constant in our world, is tough. We’re used to lots of small changes, but a big change that is spread across the world, and impacts everyone. That is mind boggling.  This is a species level event.  While we may not know what the future holds, now is a great time to think about what changes you would like to embrace and bring into the world.  Don’t wait to be told what shape the future will take, help create it. And dream big if you want. My hope for the future? That we learn that life is NOT a competition and that by lifting each other up, we will all thrive.

On that note, I wish you all well. Take care of yourselves and each other. I’m off on an expedition to the kitchen, as I’m treating myself to egg and soldiers for lunch. It helps to savour the small things.

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