Am I In A Terrible Mess?
The cost of cancer, and maintaining normality for the kids
Cancer has been in our house since July last year, scaring the hell out of us, while stealing my wife’s hair and one of her beautiful breasts. But we – that’s my wife and two kids – are getting through it. We’re supporting each other and surviving. Recently I’ve felt that we’re doing OK, but that I’m using all of my energy to stay that way. Like the swan, serene, even beautiful, but pedaling furiously beneath a glassy surface.
Parts of me are twisted and torn, and I’ve begun to worry: Is this constant pedaling costing me more than I’ve thought? Or to put it another way, am I in a terrible mess?
First, let me say this: It’s my wife who’s got cancer. It’s her that deserves sympathy. It’s stage 2 breast cancer, needing surgery, chemo, radiotherapy and a decade of hormone-sucking meds. “In sickness and in health” was my vow, and I’m proud to step up, giving her and the kids as much support and love as I can find within me. This isn’t a plea for sympathy. Instead, I’m using these words to inspect myself, and then to ask; can I do all that I need to do?
To get through chemo we stripped our lives back to the barest essentials: school runs, the kids’ soccer clubs, phone calls to family, and trip after trip after trip to the hospital, nearly an hour away. I quit my job too, back in September last year. As a recent joiner it was easy to turn around and leave by the same door I’d only just entered. And we managed, I think. The chemo — 8 cycles in 16 weeks — is over. Now, during the phony war after chemo and before radiotherapy, and with “no evidence of cancer”, we might even be winning. But it only takes a small extra push — a nudge to our boat — and I start worrying I’ll go under.
This past weekend my brother came to stay, and our two kids both had friends round, and at some point I took to my bed. I had the shivers and felt utterly drained. Was this a recurrence of the virus I thought I’d shaken? In the end I concluded it was one of those borderline physical health/mental health things that comes from feeling overwhelmed. The sort of event that might demand a duvet day but certainly not a trip to the doctor.
We’ve found homespun pleasures during these months of chemo and recovery. The most important of these is the family movie night. With a comfy sofa seating all four of us, and an enormous TV on the living room wall, we’ve got the perfect set-up for our endless nights in.
The kids are 11 and 9 years old. Until recently our movie tastes have been separate, but now they’re older and the Venn diagram of movies that work for them, and that work for us, is bursting with excellent stuff. We’ve watched the best of the superhero movies, the best of 80s cinema, the best of Studio Ghibli, the Harry Potter movies, the Paddington movies, the Lord of the Rings movies, The Greatest Showman, and more. We know each others’ favorite sofa spot, who’s quickest on the remote, and exactly how far we can push scary cinema for our youngest boy.
But I’ve been comfort eating beyond all reason, and these movie nights see the worst of it. Pizzas, ice cream, cookies, chocolate and more. I’ve put on weight and what have always been bad eating habits are now stepping over into being actively dangerous for my health. I eat badly in front of my wife, then again when she’s in another room. I had my cholesterol checked late last year and was close to being put on statins. My doctor told me to improve my diet and to take another test in March. Rather than make any actual changes, I let my credit card do the work, and signed up for the Zoe programme. Now I have data behind the horror of my diet, which continues just as before.
My wife is only 39, but I’m 47 years old. I’ve reached the age where these things are probably serious. Are they heart attack serious? Until this year I ran regularly, but my enthusiasm for that has waned. This week I went out for a 5-mile run and had to stop and walk before I got halfway, feeling the effects of the virus that has laid me low for weeks now.
More than that, I’ve suffered from vertigo for the last few years, which brings with it a constant, low-level nausea. I’ve adapted to this unpleasant state of affairs, and can even forget how I’m feeling, but it means I turn down my kids’ requests to go out and play soccer, because I know it would make the nausea even worse. This is the sort of disappointing parenting I can imagine coming up thirty years from now, when our kids get therapy for the trauma of their childhoods.
But maybe I’m getting the parenting right in other ways. My wife has always been the solid, careful one, taking care not to spoil them, ensuring predictability and discipline. I’m grateful she does this because it creates a perfect tension, enabling me to bring some of the parenting magic. Here’s a great example: We have a tiny apartment in our garden that we Brits call a“Granny Flat”. This space has a small mezzanine room that I’ve converted into a ‘Games Room’ for the kids. I’ve put in a little fridge with healthy and unhealthy drinks, a TV, a karaoke machine, a smart speaker, a bean bag sofa, and so on. This was a fun project, as I could scour Facebook Marketplace and eBay for bargains, piecing things together over a couple of weeks. And the kids love it. No online purchase will shield them from their mum’s cancer, and be assured that these kids are getting more emotional support than retail support from me, but I do want the kids to feel magic like this. When they lie back on this sofa, fizzy drink in hand, a smiling King and Queen on their throne, their happiness fills this small room and I drink it in.
My wife kept hair loss at bay during her chemo, wearing a ‘cold cap’ that kept her scalp below freezing. Her hair thinned out, but never reached the point of obvious bald spots. Since the chemo ended, a month ago, her hair loss has gathered pace. This week she finally reached her tipping point — and the clippers came out. But this wasn’t the positive, ritualized, I’m taking control moment you have in mind. She shaved her head alone in the bathroom, badly, and the remaining hair was of varying lengths, still long enough that the bald spots were visible. This had the feeling of self-sabotage about it. What made it worse is that we were having a mild argument when she did this. We’d had an irritable conversation, where I felt she wasn’t helping with preparation for our boy’s 9th birthday, and she felt I’d taken control, and we hadn’t resolved things when she emerged from the bathroom, with her roughly cut hair. I mistook it for wet hair and didn’t notice what had really happened until a few minutes later, when we were still trying to negotiate our way through this silly argument. Lord knows how I should have handled this, but I just continued the conversation, planning to acknowledge her hair once we were friends again a few minutes later. When we got there, I made cursory efforts to convince her to tidy things up at a proper hairdresser, but I knew my only chance of convincing her was to try again the next day. That failed. This was a few days ago now. Her mum is staying with us at the moment, and perhaps she’ll have better luck getting her to a hairdresser, or get the scissors out to neaten things up herself.
Update* Her mum did convince her to do a proper buzz cut. Now she’s rocking the Sinead O’Connor look. Her beauty is bulletproof, but there’s no getting away from it — She looks sick. Worse than that, she looks like her dad did when he got cancer, lost all his hair, and then died in his mid-50s.
I’m a technology marketer, spending my days on two small freelance projects and applying for jobs. It’s a bad recruitment market right now, with the country in recession, the big tech companies losing staff and the VC industry tightening its belt. I’ve generally found it easy to get jobs, until now. I’ve left two consecutive jobs after a short time in the role — The first because I hated the company, and the second so I could focus on the family during my wife’s chemo. This is undermining my CV at a bad time. I’ve applied for dozens of jobs now, and I’m getting tetchy with those that never even confirm a rejection. This morning I wrote an intemperate message to a recruiter, asking why they’d ghost me after I spent so many hours on a cover letter. I shouldn’t do this, I know.
So I apply for jobs during the day, focus on the kids’ during the early evening, and then I’ll be saved by a movie or retreat to my bed. But it’s too early for sleep, and I’m full of nervous energy. I chew the inside of my mouth and jab at my phone, watching, scrolling. Algorithms from Reddit, YouTube, Twitter, and the rest serve up endless short videos — public dancers, fights on planes — their stickiness proven on people just like me. It’s drip after drip of dilute dopamine gruel. Has there ever been a more pathetic form of addiction than these social media video feeds? At least with heroin it’s fun at the start.
In the bed
My wife joins me in bed, phone in hand, silent, shining her own endless video feed. Sometimes we’re together but apart. Recently there’s been a more distance between us than before, and we haven’t been communicating with the depth and love that we often achieve. We’ve not been having sex. With everything she’s been through recently: chemo, hair loss, a mastectomy, a new regime of meds that threaten vaginal dryness and worse, I’ve long since come to terms with her reduced libido. Seriously, obviously, who the hell would want sex against that background? My libido is on the floor too, but not at zero. What I really struggle with is getting fewer hugs, with being touched less, because the result is I’m lonely. I guess she hasn’t initiated hugs in bed because she doesn’t want this to become sexual, but lately it’s only the hugs I want anyway. In normal times I might talk about all of this with her, but for whatever reason I’ve left things unsaid, and so I’m not getting the physical closeness that’s the most important part of my “love language”. Now I write this down I wonder if I’m giving her what she needs, which I’ve long since known is ‘quality time’ with me, and ‘acts of service’. This is something else we should probably talk about, but haven’t.
If this is making your alarms ring, please don’t worry. Our relationship, 16 years and counting, has always ebbed and flowed like this, and I know our love for each other remains strong. Still, there’s something important I’m not getting, and the absence is most pronounced when we sit side by side in bed.
At some point I put the phone down and try for sleep. Occasionally, in those dark 2 am moments, I fall to the very bottom of the pit. I wonder, am I dying? And I feel no sadness for myself, just worry about how my absence would hit the kids, who are already soaked in the trauma of their mum’s cancer. On other nights I can picture an optimistic future stretched in front of us, and I want to run forward, beyond cancer and hospitals, into a safer place. But what state will I be in when we finally get there?
