I’ve been thinking about writing this for a while. What to say, how to say it. Today, a dear friend emailed to say that mine & Shelley’s pieces on infertility & our experience of it have been helpful to her, so it’s prompted me to write this one.
When I had my first cancer, in 2000, I found a cancer therapist fairly early on – I wasn’t offered any support from the hospital, no groups, no one-to-one. I think, because I was 36 at the time, they didn’t quite know what to do with me, most breast cancer groups were – then – for older women, and I presented then as I do now, as capable, as self-contained, as able to care for myself … which I am. Except for when I’m not. Anyway, I found a private therapist and a massage person and pretty much every other kind of complementary therapist I could, to support the medicine – surgery, chemotherapy, radiotherapy – I was undergoing. By the end of that year we had to extend our mortgage because it had all been so expensive – no sick pay for freelancers, no care leave for their partners, I worked full-time throughout that cancer. (And yes, we were fortunate even to have a mortgage to extend.)
That therapist, even though it wasn’t her speciality (her speciality was breast cancer), was also useful with what followed – the chemo-induced infertility, the trying and failing to become pregnant through IVF (embryos made before chemo), then my being a partner to miscarriage when Shelley became pregnant and miscarried, and then she tried IVF and we/our bodies kept ‘failing’ …
It was well over a year after I’d been through the bulk of my cancer treatment back then that I realised I’d been depressed. I was depressed. (It has a lower case d above because I don’t – since my teens – regularly live with depression. I have chronic pain since my first cancer, but not depression, and it’s not a regular thing for me, so have given it a lower case d to differentiate from those – some of them my dearest beloveds – who live with it all the time.) I knew I was depressed/had been depressed because, after many months, I finally noticed that the world seemed to have some colour again. I hadn’t noticed that it had turned grey. And the therapy helped, and the living helped, and the cancer not returning (yet) helped, and infertility was hard, and being an infertile woman in a world that equates being an adult with being a parent is hard … and I lived with it as grief, and time passed.
And then, in 2014, I had cancer again. Because it was over ten years between the two cancers it’s not officially a ‘recurrence’, except it was breast cancer again, in me again, in the same breast again, threatening me again. This time I had a mastectomy and DIEP reconstruction and the whole thing took five surgeries – it was partly problematic because of the previous surgery & radiotherapy meaning certain elements needed to be done again, partly problematic because I think reconstruction and how we speak about it is difficult. Again, I wasn’t offered any emotional support (even though I’d ticked the box asking for it, somehow I slipped between some admin cracks), but this time I figured it was probably ok, I’d done it before, I was VERY busy (Fun Palaces were just starting, I had a book to write etc), and at least I wasn’t going to be trying to get pregnant/fail to get pregnant while having cancer and cancer treatment …
However, last summer, four months after the last surgery, almost eighteen months after diagnosis, I had a little meltdown*. Partly it was that I was doing too much (all my friends who think this all the time can now nod sagely and congratulate themselves on knowing it!) – but hey, Fun Palaces was really taking off, and I had a book to finish, and a play to write (women and science and cancer), AND there was the Women’s Equality Party to help grow and support – ALL of which were time-limited things I care about passionately and could not be put off for another day, nor did any of them come with sick leave. But there was also that it came back. The cancer came back. And one of the trades I think I’d sort of made in my head and heart was that IF I did the chemo that was going to mean I couldn’t be a mother, then AT LEAST the cancer was less likely to come back. (nb, the three women I know who chose not to have chemo around the same time that I chose to have it are now all dead. You may know many others who made it through fine, but I don’t, so I also know that – even without infertility – I’d placed a lot of hope in chemo working. And by ‘working’ I kind of mean getting rid of it for ever and ever. Irrational yes, true though.) I’d also, only months after this second cancer diagnosis, watched my father-in-law die horribly and painfully of an unknown primary.
* I’m not under-playing it, it was a ‘little meltdown’. I was late to work in our tiny Fun Palaces office, I hate being late, it all felt too much, we are just four people part-time and we have a LOT to do, I burst into tears, briefly. That’s all that happened, but it’s rare for me to cry like that and I knew it was time to do something about it.
I pulled back a bit on the tons I’d been doing for WE, which was good timing as, by then, the party needed more expert and experienced people than me anyway. I practiced (and failed) saying ‘No’ to people asking for my help. I contacted my breast care nurse and asked to be referred for counselling. After a few stalled starts and another ten weeks, I got eight sessions with someone from the psycho-oncology team. The eighth is coming up, the last seven, over a period of five months have been bloody hard, really important to me, and exactly what I needed. Not just someone to listen, someone great at their job, not just someone to empathise (I’m not much keen on empathy), but someone who works with this stuff (cancer anxiety, death-fear, pain-fear – my experience of illness is that it’s bloody painful and we don’t mention this often enough, pain is exhausting and horrible) all the time, who has chosen to do this work, AND my willing to work with it. (And my occasional unwilling – admit vulnerability? In person? In writing is one thing, but actually one to one? That’s tough.) ‘It’ being my fear of further recurrence and all that might mean, my death fears, my fear of the abyss, my fear of more pain. Fear.** And my choice to try to live with genuinely knowing that I will die.
** reading Paul Tillich’s The Courage To Be, it’s possible that I actually mean anxiety, not fear. Am only beginning to get my head around these differentiations. (It’s a great book.)
Yes, we all know we’ll die. My sister died when I was 18, my father when I was 25, my nephew when I was 32, I had cancer at 36, my mother died when I was 40. I was 50 when I was diagnosed with cancer the second time. I’ve seen lots of death and illness, very close. OF COURSE we all know we’re going to die, I thought I got it last time, this time round it feels more. Very solid. Maybe every time we experience a life-threatening thing, every time our bodies are broken and slowly, painfully remade, that awareness becomes more solid. It’s sad and frightening and also hugely important. It feels like a glorious truth, because it makes my being alive matter even more.
And so, I’m doing the work in the room with the therapist, but I’m doing it elsewhere too. I’m reading loads – Danny Penman & Mark Williams’ 8-week mindfulness coursebook Finding Peace in a Frantic World which I’m loving (also hard), Elana Rosenbaum’s Being Well (Even When You’re Sick), lots of philosophy, some existential work – yes, it has taken me all this time to get to Sartre, of course it has, as an 18 yo feminist was I going to read him or Simone?! I’m doing yoga every day (for 80 days now), alongside my buddhist practice, and loving the regularity of a physical-spiritual practice. I’ve always done yoga, but never before managed it every day. And because an old infertility blog was of use to a dear friend, I’m putting this out there now too. That I’m alive and I’m also scared. That cancer (again) has made me sad and depressed and worried about dying and fearful of pain AND that’s all ok – hard and interesting and ok. I don’t expect anyone to be able to do anything about it, the thing to do is for me to know it.
It’s ok because I now find that I’m interested in death. In my death, in yours. Not in our anecdotes about death (what my mother’s death was like, who argued with whom at our family funerals, not the accompanying stories AROUND death) but the thing itself. Death itself. Stopping. Not living. Not being immortal. And what that means to being alive.
A month ago I took Shelley to Iceland (she’d always wanted to go, our 25th anniversary, our four-weddings-and-no-honeymoon honeymoon, eventually). And at the Gullfoss Waterfall I had an epiphany. I realised I felt awake. I rarely sleep well, I hadn’t slept well that night either, I’m often in pain (it’s post-chemo/post-surgeries stuff) and it often keeps me awake, but for what felt like the first time in decades, for a few minutes, I felt wide awake. My eyes weren’t tired. I commented on it to Shelley and that was that. She went off to take a photo and I walked on and a moment later I had a massive rush of being alive. Utterly alive. A KNOWING that I am alive. It lasted twenty seconds at most. It was huge, and I’m entirely certain I wouldn’t have been in a place to feel it had I not also been paying so much attention to my death.
And that’s it really. I wanted to put this here, in case it’s useful to anyone else, now or in ten years, to say that our own death matters too. As much as life. To say that it’s normal to feel rubbish and depressed and sad after illness and after treatment – when everyone we love is just happy that we survived and made it through, it is normal to mind and be upset that we went through it at all. It is normal to know ourselves to be profoundly changed (and yet the same person) after major illness. It is normal to keep on, to keep living, and to be a bit broken. To note that disease brings a grief of its own, and it’s right and proper to feel it. And yes, we (often) carry on, keep going, anyway.
I have a line in the women & science & cancer play “death is the absolute proof of life”. We know we are alive because we are not dead. I’m becoming interested in how knowledge of my death – certain knowledge – can inform my living. It’s not an entirely new thinking for me, but it is a new angle. And it’s helping.
edited to add – I’ve also been reading Irvin Yalom and found Staring at the Sun very useful, and I’ll be talking a bit about all of this, maybe/sort of (or not), at Hear Me Roar in Lancaster on March 9th