I have been thinking over the past couple of months about how your relationship with your body is a major challenge in the cancer journey.
This seems obvious, and I’ve spoken about it before when describing being first diagnosed – in the first 48 hours it was like I was separate from my body entirely. It felt alien, numb in a very unnatural way. When I moved I felt like I was at risk of causing irreparable damage, unseen, inside. It was more than just “there’s an alien thing inside me”, it was absolutely full-bodied shock. To be confronted with the fact that something you think you’re familiar with – your own body – is not as you thought it was.
But there’s so much more than that. I haven’t had to go through chemotherapy, as my tumour is not receptive to it, but I understand that is an entire experience in which body image and self-consciousness play a huge role. Instead, I’ve had radiation therapy during which I had to take steroids to reduce inflammation, compression, and to control pain. Steroids drove up my appetite, as I assume did the treatment, as my body reacted to the attack. Add to that the fact that I was finally taken off the opioids that gave me such terrible nausea.
As a result, I put on weight, something I haven’t been able to do for years. I’ve fought to maintain it, and I’ve accidentally dropped low enough to be underweight according to BMI, and been turned away from donating blood. More than just weight gain, the steroids caused my face to swell up and go puffy like a cherub. It was a huge change for me.
Unfortunately at the same time, my pain was so aggravated by treatment that I was left absolutely bedridden, and unable to walk without crutches. You can imagine that a lack of any exercise or much movement at all simply compounded the weight gain. The double-whammy here is that on top of weight gain I was adapting to disability, and a body that wasn’t doing what I wanted it to, anymore.
I couldn’t recognise myself in the mirror, and I couldn’t stand at the mirror for long without having to rush in a hobble back to bed and wait for the pain to ease. I think not recognising myself was a big factor in triggering not feeling like myself.
By the time I was weaned off the steroids, my swollen face ached – it felt like I had two black eyes. I suppose this was aggravated by bad sleep for a long time. The pain and weakness mean I can’t sleep like I used to. I am most comfortable on my side or front, curled up. But now I could get stuck unable to roll back over, or I could get so stiff that rolling over triggers bad pain. Again, it seems obvious that disability infiltrates every part of your life, but there are moments where you really feel it.
At first gaining weight was a benefit, because I struggled for so long previously, and I thought that once I got home I would be able to go to the gym, and build muscle while keeping the weight. But it tipped over to a point where I became uncomfortable. The issue isn’t so much weight gain as the discomfort – they say attractiveness is mostly confidence, whoever “they” are. I absolutely lost confidence.
I cried my way through the “diet” chapter of a book on spinal chord injuries and pain. The book was incredibly valuable to understanding my own pain, but it was also confronting. To be grouped along with those who have paraplegia and other serious injuries made me feel profoundly guilty. Things could always be worse, and I try to always remember that and be grateful. But pain is pain, no matter the severity of the spinal chord injury (SCI). One line remember the most, was that even a couple of kilos can be the difference between transferring independently (from wheelchair to bed/toilet/chair etc) and needing assistance or struggling to mobilise.
While I spent all of February in hospital, I was in a vulnerable place. I was thinking that if only I had been a bit more active in January, maybe then I wouldn’t struggle to mobilise so much. This probably isn’t true, and there wasn’t anything I could do before the pain specialists saw me, but it was incredibly hard to stop thinking it every time I got up. I was blaming myself for the results of treatment.
Not feeling attractive, and the resulting lack of confidence, can impact a relationship if you aren’t careful. It is not my partner’s fault that I’m facing new challenges, but I am undeniably not the same person I was a year ago. I don’t mean this physically, though that’s true as well, but emotionally and mentally. The cancer journey is one big evolution with many smaller metamorphoses within it.
It also made me self conscious in front of friends, which is just the silliest thing. Being bedridden means I haven’t had a haircut in many months, which could go a long way to making me feel a little fresher. I certainly haven’t worn make up in nearly half a year either. To look through Instagram is to slab myself in the face, as other people’s lives seem so polished and effortless.
When you’re at war with food, and at war with your digestive system, there is surely an inevitably strange relationship with your body. It’s not entirely in your control anymore, and you just have to guess at what’s happening.
It blows my mind to think that in the last 5 years, when I had sciatic nerve pain down my legs, and back pain that kept me up at night, I still managed to do so much. During the time in which I’ve had symptoms and pain, I have hiked up four mountains. The picture I’ve chosen above was from 2015 in the Lake District, England. I look at it now and I’m amazed that I could stand up straight, that I was so slim. In contrast now I feel heavy, I feel slow. I feel so far away from ever regaining that body, from regaining that ability to hike as far and as high as I wanted to go.
This envy of my past self is a desire for both image and ability. I want to be comfortable with my body image as much as I want strength. I think that if we don’t acknowledge that these things are so intertwined, then there’s the risk of rehab and recovery being driven by the wrong goals. There’s the risk of becoming far too invested in image, of possibly developing an eating disorder, and dependence on the validation of others. When you’re sick for this long, there’s an obsession over symptoms, of tracking progress, and counting, always counting. Tracking calories while in treatment was a way to ensure I was getting a balanced diet when I needed it the most. But counting calories can be a slippery slope towards a restrictive diet.
My physiotherapist has told me that a recurring theme he sees in those he works with is looking in the mirror and not seeing yourself anymore, just as I experienced in Prague. I would suggest that another is not fitting old clothes anymore. For a long time I have felt housebound simply from the fact that I wear mostly comfy clothes and pyjamas all day. I don’t fit my nice clothes, but to buy new clothes feels like defeat, like accepting this body I’m so uncomfortable in.
I did buy nicer clothes that fit me, eventually. Because when the choice is either to remain miserable and overthinking everything, or to accept your body as it is, then move on, it isn’t really a choice is it? You just have to move on.