A post I never thought I’d write: when cancer arrives

I’ve been a healthy person all my life. I’ve only ever been hospitalised very briefly when I was able to give birth naturally to my two boys, and then last summer when I somehow contracted bacterial meningitis. I thought the latter was the defining health crisis of mid-life.

So you can imagine my surprise when, at the end of July, I was diagnosed with stage 3 bowel cancer.

Read more: A post I never thought I’d write: when cancer arrives

I took the diagnosis pretty well, I think. I was prepared for it. I knew cancer was a possibility for some of the symptoms I experienced – the urge to go to the bathroom and then difficulty doing so, followed weeks later with blood. I watched the colonscopy screen as the 3cm tumour loomed into view, partly blocking the tunnel that was my large intestine, like a mountain range rather than the smooth capsules of a polyp.

I have my moments though: the thought of not being here for my boys (now four and nine years old). The thought of not keeping my contract to them to help them grow up. The idea I might not be there for them as the person and place in the world that loves them for who they are unconditionally. The fear and guilt of being forced to abandon my post.

There is no way to soften the blow of these thoughts, except to say to myself we are not there yet, and research the statistics that give me hope.

I’ve also been surprised at the moments that pang out of the blue. Usually these are when I remember myself as a younger woman – distracting myself and passing the time before the latest scan result or waiting to start treatment, and realising I’m leaning on the same tactics I used while waiting for my babies to enter this world. I was so young then, looking forward to an event that would be painful, but for the best possible outcome that I desperately wanted and looked forward to.

Now I wait impotently and impatiently for more painful experiences (in my case, surgery and possibly chemotherapy), in search of comfort and healing that will restore me to the person I was and the life I desperately want to keep living.

Feel the feelings

I made the mistake of trying to power through, after I first learned that treatment will not be swift. The NHS guidelines for treatment times from the point of urgent referral (62 days, or two months) or the diagnosis (31 days) are both outside of my reality after delays at my local hospital, and there’s nothing I have been able to do about that. When the reality hit, I cried and then tried to pretend all was normal.

But actually, the best thing I could do was go to bed early and cry. I cried until my body shook. That was what I needed.

Sometimes, we have to allow ourselves the chance to feel what we’re feeling. Sometimes what we’re feeling seems ugly to us, or a bad reflection of who we are (anger, envy, resentment…we’re taught not to indulge these in particular). Not wallow, not swallow, but feel. Only then can we honestly process it and move forward.

As the Observer’s resident agony aunt, Philippa Perry wrote, “You cannot scold a child out of a tantrum, nor yourself from feeling grief.”

In my case, a couple of bad days gave me clarity and I’ve pursued a referral to a different hospital. I couldn’t be happier, and my treatment is on track.

Smiling beneath the mask as I start my care at University College London Hospital

More than that, I’ve given myself permission to feel what I feel. Feelings are not permanent, and they do not define who we are, but they are real and valid and we need to accept them rather than resist them.

Seek enjoyment and connection and let go of what’s out of your control

The day after my down-and-out crying, I enjoyed taking the kids to the library, where we all picked out some books. I got a feel-good easy read for myself. We walked and talked and came home to read together.

The next day, I had no energy. The stress and emotional strain of the previous two days and the cumulative loss of sleep from restless nights knocked me flat. I took a much-needed nap while the kids got extra screentime. I still had no energy, but I had booked myself a swimming lane for 2pm, so at 1:30 I was packing my bag and changing into my swimsuit, wondering if I should just cancel.

That swim was glorious. Feeling my body move through the blue water, the air moving in and out of my lungs, and the water lapping around me lifted my spirits and my energy levels. The physical exertion helped move the trauma of not being listened to and not being told the whole truth by the clinical team through my body. I think I left the worst of it in the chlorinated water.

I also rebelled against the same clinical team by going to the grocery store and picking out foods I wanted to eat. I’ve been instructed to go on a low fibre diet, so have not been able to eat any fresh fruit or vegetables in a month. I’ve been limited to maybe a juice or two a day, and a tinned fruit if I’m lucky. Me, who usually eats plenty of whole fruit and veg every day, has been surviving on pot noodle, white bread, and corn flakes.

Supposedly this low fibre diet is supposed to help avoid bulking up that could cause a blockage in my bowel where the tumour is, but the diet change my symptoms have been worse and I genuinely think it’s affecting my mood and energy.

I bought myself a juicer and stocked up on the celery, kale, apples, ginger, oranges, lemons, cucumber and beetroot I’m craving. I got a selection of soups packed with vegetables and spices, and even some yellow squash and cavolo nero to go with my sticky marmalade tofu and fried rice for dinner, and okra for adding to stews.

It might sound infintismally small, but having food I love, a book to engage my imagination, and time with my kids (when they weren’t fighting with each other…for once) was a lift to my spirits. The feeling of freedom whilst swimming was an antidote to the lack of choice I had in my healthcare.

That doesn’t make the lack of choice at the time okay, but it meant a break from misery with a feeling of joy and pleasure. It helped to know I was taking care of myself, even if I didn’t feel others were.

This has, I admit, been a hard one for me. The thing I want to control the most is my treatment and ultimate survival, and that’s where I had the least control.

There is still a lot I cannot control, and that still bothers me. But accepting what that is has helped me figure out new ways to move forward, new things that I can control.

I will try to keep posting my experience of cancer, alongside working, parenting, and living a happy, fulfilling life. I expect challenges, as I’ve already found, and hopefully can learn and grow myself in this process, and share anything I learn along the way.

A response to war

It’s hard to believe that two years ago we were preparing for a global pandemic, stockpiling loo roll and pasta.

A few months later, we would watch a Black man murdered in the street by the police as he called for his mother and said, “I can’t breathe.”

Thirteen months ago, I watched in horror with the rest of the world as a mob of right-wingers stormed the Capitol in my mother country.

Whilst still recovering from these, we now read stories of Ukranian parents trying to explain war to their children while they try to settle to sleep in underground Metro stations amid the moan of air raid sirens, as young men are called to arms and prevented from fleeing to safety.

To centre ourselves in the midst of all of this is quite rightly felt as a self-indulgent privilege and a disservice to the people who have the most to suffer in times like these. But to feel nothing as we witness these atrocities is inhuman.

So what do we do? What can we do? Or perhaps more precisely, what do we do when there seems little we can do?

Continue reading “A response to war”

Resignation

As I face another day juggling working from home with childcare, without a clear end line in sight, I am reflecting on how time itself behaves differently in times of crisis and upheaval.

In some ways, time has slowed down. Days stretch ahead of me without the familiar forced transition points of childcare drop-offs, commutes and plans outside the home. I’ve been working from home three weeks but it feels like three months.

And in other ways time continues to race past me. The days blur into one another. Trying to get things done at work seems to be taking longer. I keep thinking I’m nearly there with something, only to have it drag out into another day, and another.

Part of me responded to the crisis by being productive – maybe too productive. Churning out ideas for disaster-mitigation at work, cooking, cleaning, limited large grocery shopping trips, exercise at home, schoolwork, volunteering, checking in on neighbours. It all crashed yesterday.

I hit a big snag on something at work. A rather big setback. And I’m still not able to resolve it. This would be frustrating under normal circumstances, but it is yet another situation outside of my control – a microcosm of the global situation as we lose control to a virus.

What can we do when something is beyond our control?

Resign ourselves to it.

This does not mean giving up entirely, or letting the powerlessness overwhelm us. But fighting only works for so long. Fighting against something outside of my control will take its toll. I realise that if I look the demon in the face and resign myself to it, I can let go of a lot of the tension between myself and my reality.

Once we have resigned ourselves to the uncontrollable, we can move forward to the next step.

Identify the need / problem.

My need in my work situation is to find income. The uncontrollable factor was some misquoted figures that led me to make certain decisions and recommendations that now seem mistaken, as apparently the figures were inflated.

I have been going down a rabbit hole of trying to right the wrongs that have happened, which inevitably leads to blaming/shifting blame, dread, or circular conversations with myself where I try to logic a way out of the problem that started in the past – obviously far beyond my control in this moment.

But actually, it’s far easier once I’ve resigned myself to the uncontrollable (the initial figures appear to be wrong and inflated) to identify the problem or need (I need to find other ways to reach the target I’ve set).

Now that I’ve left the uncontrollable behind and refocused on the problem before me, I can move forward to step three.

Create a new plan that is in my control.

Now I’m clear on the problem, I can be creative again in finding ways to solve it. Instead of rehashing past data and past decisions, most of which I cannot not change, I am back in control and able to think laterally.

Resigning to isolation

I write this blog because I need to read this blog. I hit a real low yesterday, and whilst it was triggered by mundane work stuff, I genuinely believe it was the culmination of, well, everything that is beyond my control right now.

When will we be able to end this isolation? Will anyone I know and love get this thing and not survive it? Will my husband and I have jobs on the other side of this?

It’s easy to spiral. But all those questions are largely beyond my control. So instead, I’m learning to resign myself to this new reality. I thought I had done so weeks ago, but I’ve realised I have still been holding on tight to a false sense of control.

And I can now refocus – what is the need? Marshall Rosenberg, a leader of Non-Violent Communication, has said that needs are never in conflict. Strategies to meet those needs might be, but the needs themselves do not create or necessitate conflict.

I have been in conflict with reality. So now, I’m trying to re-centre on what my needs are, so I can think of coronavirus-compatible ways to meet those needs.

Journal prompts

I can’t do __________ because of __________.

If _____________ was not fixed, then I could try or learn _______.

I need ________.

Some strategies that might help meet this need are _______.

Not another COVID-19 blog…

So if you’re like me, you are simultaneously sick and tired of talking about COVID-19 and disinterested in anything else. Here in a suburb of London, my life is unrecognisable because of it. So I thought I’d share some of the tricks I’m learning to make this weird time in my life more manageable.

Find a new routine

We know young kids benefit from routines, but bearing in mind they are just smaller people, it makes sense to apply the same logic to ourselves. Going to bed at the same time each day, waking up, eating meals at set times – it gives shape to the day and provides a welcome feeling of normality in an otherwise anything-but-normal time in our lives.

During the week, I’ve tried this and it’s been really helpful. I wake up at the same time as usual, make breakfasts for myself and the kids, have my breakfast and coffee while watching one cycle of BBC Breakfast (making sure to turn it off when the stories start repeating). I log in at the same time for work, then break to do my PE with Joe “the Body Coach” Wickes on YouTube, work some more and get my son started on his school work at the table next to me. I am trying to eat lunch at the same time as usual and finish work on time. Then it’s dinner, baths, bedtime stories, kids asleep (at their usual time), and an hour or so of TV and conversation with my husband – much like our pre-Covid-19 lives.

Have a purpose (or several)

I’ve written previously about what psychologist Paul Donan has termed the “Pleasure Purpose Principal”, which basically says everyone needs pleasure and purpose for well-being. Different people have a different ideal mix – my husband responds well to more pleasure where I really thrive on purpose – but we all need a mix of both.

I would hypothesise that at this time, most of us could probably benefit from dialling up the purpose element, as we are in a very disempowering position, held hostage by an invisible virus. Anything we can do to counterbalance the disempowerment by feeling impactful and empowered is a great antidote. For me, I have become involved in my local mutual aid group, which partially means moderating the Facebook group and partially linking up requests with an amazing group of local people who have volunteered. I’m checking in with my elderly neighbour who is shielding. And I’m volunteering to do pro bono coaching for people struggling with this as part of a coaching collective that has formed during this crisis.

I’m also crafting my day job so I am doing specific, concrete things to help people. I work for an HIV charity, so I’ve been focused on providing reassuring information and support to our supporters, many of whom are living with HIV themselves and feeling frightened or unsettled, even if they aren’t amongst the list of people who are particularly vulnerable. But I’ve also found a sense of purpose supporting my colleagues – which is relevant for just about anyone, regardless of what sector we work in or what our companies do.

What would give your days a sense of purpose and impact right now? Maybe it’s spending more time with your kids. Maybe it’s your day job, working remotely. Maybe it’s volunteer work. Maybe it’s a creative project – to start writing that novel, paint your masterpiece, or work on that side hustle you had in mind. Don’t worry about other people and don’t judge them or yourself – focus on what will give you purpose.

Connect, connect, connect

I don’t know about you but this is reminding me that I actually really like people. I normally have to be careful about carving out time to be alone, and that’s still the case to an extent as I’m now constantly surrounded by my family. But I am also finding it helpful to be deliberate and intentional about connecting with people.

During the work week, I’m in pretty regular Zoom meetings, and have been making sure to have some chit chat in these calls. We have a workplace (i.e. Facebook for the office) that I’ve been interacting with everyday, to help replace the chats in the office kitchen.

Outside of work I’ve been busy with a WhatsApp group of two of my friends, checking in with another friend via WhatsApp, active on Facebook (which I usually eschew to a large extent), and connecting daily with the other Mutual Aid volunteers. I still skype my parents once a week. This all adds up and means I feel part of a community and connected with others.

A key part of the strategy for me has been little and often. WhatsApp and Facebook are not the same as a video call, and a video call is not the same as being together in person. So I’m trying to set up more zoom drinks and house party sessions with friends and family, which combined with the mutual aid group zoom meetings and my local Quaker Meeting via Zoom of a Sunday morning and all the WhatsApp and Facebook conversations means I have a rich and varied socially distanced social life.

How can you connect with others? Which people or communities are best to connect at more depth, like using zoom, and which are fine to WhatsApp with or interact on Facebook? Enjoy the variety – it’s horses for courses.

Interact with nature

I’m fortunate to have a garden, so during the work week I’ve made a point of taking a half hour lunch break sitting with my salad in the garden. But even without a garden or when the weather turns from the brilliant sunshine we enjoyed last week, there are ways to have nature in our lives.

You can crack the windows to allow fresh air into your home (even if it’s grey and raining). Light a natural candle or diffuse some essential oils to bring some natural smells into your space (more on this below). Enjoy plants in the home (more in this below as well). Even substitutes like natural white noises or a picture of natural settings have been shown to help people recover faster in hospitals.

On house plants: I’ve invested in more houseplants with some of the money I’m saving with our nonexistent childcare (our nursery has been brilliant and isn’t charging us during their closure, as well as the afterschool and breakfast club at my other child’s school). I’ve also replanted some of my spider plant’s babies so we have plants dotted all around the house. This helps clean the air and is subtly soothing. I also “splurged” a whopping £5 on flowers at Lidl when I did my grocery shop, so we have some beautiful cases of flowers. It doesn’t have to be much to feel quite different.

On essential oils: if you have an oil diffuser, great, but if not, you can put a few drops of oil in a mug and add boiling water (note boiling not boiled). This diffuses surprisingly well. If you have a hot plate or a drip coffee maker with a warming plate where the carafe sits, you can place the mug in that for even longer lasting diffusion.

Get into your body

Our brains are on survival mode and dealing with a lot of bizarre shit right now. Getting into our bodies and switching off our brains can help immensely.

One way to do this is exercise, which is of course healthy to do anyway. Yoga with Adrienne or PE with Joe Wickes are both free on YouTube and require no special equipment. In the UK we’re allowed one exercise outdoors a day, so now’s a great time to get into running if you’re not already, or to cement a “run every day” routine.

But another way to get out of our heads and into our bodies is breath work and mindful meditation. I have completely fallen out of this practice, but recently trying a breathing mediation I realised I had been shallow breathing for days. The stress and uncertainty of this whole situation had meant I hadn’t been breathing as deeply and calmly into my lungs. Even a short session of mindful breathing left me feeling exponentially calmer.

A quick way to breathe mindfully: breathe in and out normally and naturally. Don’t force your breathing. Pay attention to the feeling and sensation of the in breath, where it switches from in breath to out breath, and the sensations of the out breath. When you notice you’ve been distracted by thoughts (more “when” than “if”), return to the sensations of the breath. That’s it. Do that for as long as you can.

Be kind to yourself

Lastly, be kind to yourself. This is stressful. We’re in unprecedented times. We’re balancing home schooling, parenting in challenging circumstances, and working our day jobs with kids (sometimes literally) underfoot. It’s a global situation – there is nowhere to go that isn’t affected, or won’t be soon. That’s a challenging situation to be in.

We may need to nap during the day, or take it easy when we get the chance. Despite best laid plans to do loads of online courses to better myself during this time, or read more books, or watch better television as opposed to rewatching episodes of Brooklyn Nine-Nine (or now, Tiger King – oh my lawd!), I am often spent at the end of the day. I just want to switch off and scroll mindlessly through Facebook. During my lunch breaks out in the garden, I’ve found myself unable to do more than look at the signs of spring and listen to the birds. I’m feeling tearful less frequently than week 1, but am still choked up about once a day.

This is okay. Do what feels good. Pay attention to what does not feel good. We’ll get through this.

When ‘as if’ starts to become reality

I’m reading Richard Wiseman’s book Rip It Up, and have been fascinated by the numerous studies linking facial expression to emotional moods in participants, from John Laird’s initial studies to studies around the world over decades, each with slightly different approaches yet gleaning similar results.

To summarise, smiling (or simulating isolated facial movements related to smiling, such as holding a pencil in one’s teeth) left people feeling happier (even if they weren’t sure why) and frowning or making angry faces (or again, mimicking aspects of these expressions) left people in more negative emotional states at the end of the studies.

This reminds me of something Gretchen Rubin often says, that the opposite of a profound truth is also often true. So pretending and acting happy isn’t the same as being happy…but can acting happy lead to real happiness? Continue reading “When ‘as if’ starts to become reality”

Wallowing, Swallowing, Allowing

I had an interesting conversation recently about the movie Inside Out (side note: one of the unintended side effects of parenthood is most of my film viewing is family films; thank god for Pixar…)

The person I was talking to hated the message the film gives to kids. “It doesn’t tell children they can choose how they feel,” she said. “And I just couldn’t stand the way Sadness was always moping.”

Inside Out.jpg

Conversely, I had liked the message the film may have been imparting to my kids; namely, that we all have a range of emotions and we can share these, rather than trying to pretend they aren’t there, can’t lighten the burden.

As an adult, this is something I continue to deal with – how to respond to negative emotions. Do you wallow in the negative emotion? Or swallow it, suppressing it until you no longer feel it? Or can you allow the emotion to exist without taking over?

Continue reading “Wallowing, Swallowing, Allowing”

When the world is getting you down

I have seen a lot of people suffering lately.

The rise in ultra-conservative politics. Deep division in our societies over what feel like key issues. Hurtful actions and language towards women. People rising to positions of power that fill some people with a sense of fear, injustice, or powerlessness.

We consume the news like an addict, looking for relief from the very thing that troubles us.

So I wanted to write a post in the hopes it provides some balm, some inspiration, for responsible self-care. Continue reading “When the world is getting you down”

Transformational pain

Today I’ve been feeling the full weight of endings.

The weather here in London has taken a sudden turn towards autumn, breaking crisp and cool this morning. As I walked my son to school, holding his hand in one hand and his bags in the other, with my baby in the carrier, it hit me: this is my last full week of a typical maternity leave. Next week, the baby (probably more a toddler now) starts settling in at nursery. Continue reading “Transformational pain”

Do as I say, not as I do

There have been several times when I’ve caught myself telling my five year old something and feeling like a hypocrite. Like when I tell him to calm down and yet I know how much I struggle to contain my emotions at times (a work-in-progress I write about here frequently).

It got me thinking about all of the lessons I (try to) teach my son regularly that I could do with following myself. A bit like the popular Everything I Need To Know I Learned in Kindergarten. And the more I thought about it, the more things sprang to mind. Here are a few of my favourites. Continue reading “Do as I say, not as I do”