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.
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.