This blog post has taken me 10 weeks to write.
Now don’t get excited, that doesn’t mean that what you are about to read is a piece so well crafted and researched that it has taken the entire gestation period of a raccoon to write. Far from it. Prior to today, the amount of time I’ve spent actively engaged in writing, since my last post, has been about 2 minutes. On the other hand, the amount of time I’ve spent in a complete creative and literary void has been 9 weeks, 6 days, 23 hours and 58 minutes.
I’ve tried to write about other things, to delete and restart, to forget about this blog post completely, but 10 weeks later and it’s still there, like a log in a dam, refusing to move. Other blogs are stacking up behind it, funny blogs, informative blogs, waiting to be written, but this one is stuck, and until I write it, nothing else is going to come out. So I’m just going to have to bite the bullet and write it. Here goes.
It could be worse
Cancer treatment sucks the heart and soul out of you. The physical effects of chemotherapy and radiotherapy are different for everyone, but they are more or less all pretty horrific. My chemo reactions weren’t anywhere near as bad as some people experience, but they were still pretty horrible. I’m not going to list them all by the way, I’m not prepared to share that level of intimacy with you, but you can google them if you want. Call it cancer research (ha! See what I did there?).
I don’t know why I do this, by the way, this thing where I respond to questions about how I am or how I’m doing with an “OK, but other people have it much worse”. I’ve noticed myself doing it a lot and so has my counsellor (more of her later, but let’s call her Claire for the purposes of the blog). She asked why I try to downplay my own experience by comparing it to the worse it could have been, or to the experiences of others. She suggested that I compare it to having had no treatment at all, and then acknowledge how godawful it actually was.
Later that week I found myself underplaying my side effects to my oncologist, who really did need to know the full picture, not my Pollyanna version of it, and I realised I was being a complete, avoidant arse - what happened happened, to me, and it was shit. A few weeks after treatment a lot of it still is shit. The side effects are ongoing and life-limiting. Some of it may well continue to be shit for the rest of my life. And all of that needs to be acknowledged and validated. She is a very sensible woman, my counsellor.
Perhaps I’ve been trying to reassure the person who was asking, to spare them from the upset of knowing quite how horrible it has been. I often downplay things to spare other’s feelings. Or maybe it was to try to shield myself from the trauma of the experience in some way - cancer really does leave you with PTSD. Or maybe, and this is the bit that’s taken me 10 weeks to write, maybe...
I can’t cope with being vulnerable.
Oof. That hurt.
A Letter From Matt
The whole ‘being vulnerable’ thing hit me in July, just after I got a letter from Matt Hancock’s ghost telling me I was Clinically Extremely Vulnerable and that I should make a jolly good effort to stay alive, because his government had decided to take all the Covid breaks off and let Nobby Nobster and his mask-free mates run riot in the streets. So much as Boris and Co might like to (not much at all), they were actually going to do fuck all to protect me, but they still felt the need to give me 6 pages of utter bullshit advice on how I might want to fend for myself. They didn’t even have the decency to wish me luck. Wankers.
Anyway, once I’d got over the fury of the politics, I was left with the pain of the slap. ‘Extremely vulnerable’. Me. I carried that phrase around with me for days, like a yoke, weighing me down and stopping me from moving forward. It’s astonishing how that one word, ‘vulnerable’ had a greater effect on me than any of the cancer treatments I’d had so far. Without even knowing what it was that was bothering me, I sank into a funk of desolation. I was 2/5ths of the way through chemo and about a third of the way through radiotherapy. And I still had the dreaded brachytherapy on my horizon, looming, enormous and menacing, blocking out my sun.
(2 day pause because I have an absolute mental barricade about this blog and keep finding excuses to wander away from it. But I’m back, because I’m determined to unblock that blog jam. Blog jam. Ha!)
When I was diagnosed with my second cancer, back in April, I asked my breast cancer nurse to refer me for counselling. At the time I felt I wasn’t going to be able to cope with the burden of two cancers, let alone one, but actually, anyone with a cancer diagnosis will benefit hugely from counselling, it’s an impossible burden to carry alone. Having cancer brings a huge emotional responsibility - not only to manage your own mental health, but to manage the fears, expectations, reactions and misconceptions of your friends and family. As I was saying earlier, with the downplaying thing, many cancer patients, especially women like me, will try to shield their loved ones from the realities of the disease. We’ll underplay our own feelings of terror, in order to protect others from it. We’ll be upbeat and positive when we’re feeling anything but. We’ll hide our worst days away from the world, curled up on a sofa, or sobbing on the bathroom floor, as chemo rips through our bodies and tears through our lives.
So having someone to talk to, who isn’t one of those very people you try to protect, who is trained to understand the realities of cancer, both the treatment and the impact, is essential. My referral took a few weeks and actually, by the time Macmillan offered me an appointment, just before chemo started, I felt like I was doing OK. I nearly didn’t go. I’m very glad I did.
By the way, the delay between referral and appointment is no fault of Macmillan’s. They are the finest cancer charity I’ve come across, and the government has cut their counselling funding, so if you have any spare money, please send it to them, or consider having a coffee morning at your school. The link is here:
So anyway, I had my first session with Claire and obviously I was completely wrong about not needing counselling, as I broke down into a sobbing, snivelling mess within seconds, which apparently is pretty standard for us burden-carriers. As our sessions progressed, we talked about my blog jam, and she deftly teased the problem out of me. It was my reaction to that NHS letter, to that official statement, that I was ‘vulnerable’. Claire looked at me and said “vulnerable is a very loaded word”, and clarity slowly flooded my brain. I considered what ‘vulnerable’ meant to me, and I realised that it is a term that we use in education, and in society, to describe people, especially children, women, who have suffered at the hands of others, or who are in need of help and support from social or domestic agencies.
As rhino skins go, I have a pretty excellent one. I told Claire that I am a strong, intelligent, independent and successful woman. I am a solver of problems, a leader of teams, a fixer, a coper and a giver of support to those in need. So I am not a vulnerable woman, and I do not fit that description, thank you very much and how dare you, Matt Hancock!
And then I had to stop talking, to realise what a complete arse that made me sound. What did that say about my attitude to those who are ‘vulnerable’ in the whole, safeguarding and social meaning of the word? That I am somehow better than someone who has been through whatever tough time has brought them to their current vulnerable state? Possibly. That I am guilty of some form of intellectual or social snobbery? Probably. Did I really need to take some time to explore and challenge those attitudes and reactions in myself? Definitely.
So I did, and it’s taken me a long time. And it was uncomfortable and challenging. But I think that I am now at a place where I can accept that cancer has taken control of my life in a way that I utterly despise, and that medically, physically, I have taken a hell of a kicking. I don’t have to like it, but I do have to accept it. I am no longer in control of my life. The life I had before is gone, and now I have to get to know the new life that is unfolding in front of me. Post-treatment, in recovery, living as a cancer patient. Forever.
Because despite what you might hear, cancer is never cured. Not medically. If you are lucky, you may be told you have ‘no evidence of disease’ or that you are in remission, but once you have had a cancer diagnosis, whatever the outcome of your treatment, you will always be living with either ongoing treatment, palliative care,or the fear of recurrence.
And that understanding, and that acceptance, has taught me that those things that make people, women, me, vulnerable, can happen at any time, to any of us. So whoever you are and however successful you may consider yourself to be, vulnerability is only ever one twist of fate away.
One in Two
Since I was first diagnosed, I have been contacted by 7 separate friends who have also been diagnosed with some form of cancer. We’ve read the sad stories of famous names lost to cancer. 1 in 2 of us will get cancer in our lifetime. The TV campaigns for cancer awareness are everywhere, but there is still very little discussion about the long-term impact of cancer treatment, the damage that it causes, the higher recurrence statistics, the poor support and acknowledgement there is for those living with metastatic and terminal cancer.
So with cancer there is no happy ending, no party popper moment. I’m afraid I can’t tell you I’m out of treatment and it’s all over. It never will be. But I can tell you that I’m out of active treatment for now, my medics are happy with how things are going, and that I’ll be having scans, check-ups, ongoing medication and checks for pretty much ever. But for now, I’m starting to feel a bit more human, I’m exhausted and battered, but I’m doing OK. I’m vulnerable, but I’m OK.
Damn, Hancock was right. Bollocks.