Croyde Bay, North Devon
A few weeks ago I gave birth, by caesarian, to a baby-sized tumour weighing 2.3 kg. My womb and one ovary came out with it. It had variously been referred to by the doctors, amongst other oddly random objects, as a football and a watermelon, though when it came out, it looked like a plucked chicken, only more red. (How do I know this? I asked them to take a picture during surgery, which they did, and I’ve got a copy on my phone. Don’t worry I stopped short of posting it here so do go on enjoying your dinner).
Am I ok? I’m fine, recovering from the op, making good progress. Was ‘it’ ok? Still not 100% sure – no straightforward cancer cells were found, hoorah, massive relief, but there were ‘atypical features’ and the chicken, as I fondly like to call it, was sliced up and sent to the Oxford Cancer Centre, with no news as yet.
There, I said it, the c-word. Once the c-bomb’s been dropped, everything changes. One minute my world was as I knew it, at worst I felt slightly annoyed at the prospect of having to undergo abdominal surgery which would be grossly inconvenient for my summer plans, my work and my fitness, but hey, no big deal. The next I felt myself bobbing up and down on soup-like murky waters with the doctor’s rhubarb rhubarb noises floating all-around me, whilst being pelted by big loud scary words coming out of his mouth in capital letters: suspected CANCER. URGENT referral. 2-WEEK pathway. You might need CHEMO.
Turns out no sinister diagnosis was made, ever, and while that’s obviously a very very good thing, being in limbo-land between perfectly fine and really not at all fine isn’t great. I couldn’t shake off the ominous dark cloud that followed me around wherever I went, constantly hovering above my head: would it pass and take its shadow with it, or… They say let’s not go there. But when you’re halfway, ‘there’ seems very much within walking distance.
To start with there was lots of activity. Tests, scans, phone calls, googling. The internet is a blessing and a curse. Diving into a world which previously was ‘for other people’. Short-term my productivity increased, my decision-making became clear and fast, no faffing, don’t have the time. I became slightly obsessed with throwing out household chemicals, particularly ones you put in or on your body. Aluminium: bad. Mineral oils: bad. Nano-particles: bad. Some smelly days later the aluminium-laden deodorant was back. Life’s a grey area, so forgive my inconsistency. My priorities crystallised: keep calm and carry on, don’t make it harder for the kids, family, friends. Then the process seemed to grind to a halt. My notes were lost. My scans weren’t sent on. Appointments weren’t made. Essential blood tests weren’t done, though I was jumping up and down trying to make myself heard like a toddler with a one-track mind: Give me a blood test. Give me a blood test. Give me blood test. No one listened. Delays, delays, and more delays. I could feel my lump growing bigger and bigger. People said: ‘at least it’s not a diagnosis yet. Say what you like about the NHS, but when things are urgent, everything moves fast’. That’s not been my experience. My experience has been somewhere between farcical and Kafkaesque. My CT scan took place, steampunk-style, in the back of a lorry, literally, I kid you not. Inside was a flashy whirry machine from the future, which spoke to me in a female voice. Before ‘she’ was switched on, the CT guy asked: “Have they told you what’s wrong with you”? I hesitated. Why’s he asking that? What does he know that I don’t? ” …Yes?” I ventured. “Well, what is it?!” “I have a large tumour in the uterus?” Relief flooded across his face. “Ah, the uterus! That’s helpful. I can’t read the writing on the form”, waving a piece of paper at me, which looked like a bird had stepped into a footbath full of black ink and then walked across it.
From there things spiralled downhill in a catalogue of errors and incompetence. Wherever I went, whomever I saw, ‘how to complain leaflets’ were shoved into my hands. Please complain about the other department, about the other consultant, the other hospital. Do complain, do. I may do later, I may not: I can’t help feeling complaints are encouraged under an obscure agenda which is somehow part of the system. The main problem as I see it is that it’s no one’s job to join the dots, and good luck to you as a patient if you try to join them yourself. I won’t bore you with all the details now, but luckily I kept records including hard fought-for test results (‘We don’t like to give you those; you’ll just google it’). I took a print-out of my (20-pages, and growing) tale of woe to every appointment, and seeing no one ever had my details, I ended up, every time, surrendering them to whatever member of medical staff I was seeing. Handily, on one occasion, I could quote a certain person verbatim, after they denied something they had told me earlier, and on top of it demanded “Who told you that?!” Well, you did! Look, I wrote it down. The power of the word, the pen, language.
Once you submit to the creaking and groaning NHS machinery, it quickly becomes very clear that you turn into ‘a case’. ‘Your case’ is discussed, not you are discussed. Who deals with your case? ‘They’ do. If you squint a bit, ‘they’ turn into ‘us; it’s very much us and them, and more fool you if you think there’s much love lost between the two sides. Nothing illustrates this better than when I mentioned that, earlier, I didn’t know about referral pathways. “To be honest, you’re not supposed to know”, I was told. “That’s just for us”. Language is used to set up an unbridgeable chasm between the ‘experts with the jargon’ on the one side and the ‘patients with no voice’ on the other. The former invest themselves with a sense of agency, painting the latter into a silent and lonely corner somewhere near the receiving end.’Talk to us!’ urge the complaints leaflets. I’ve been trying. ‘You’ aren’t listening.
Post-surgery, advice on hysterectomy recovery is framed in terms of housework. Don’t pick up anything heavier than a kettle, peel your vegetables sitting down, don’t hoover just yet, though a little dusting is ok. Hm, pretty sure it doesn’t say things like that for post-prostate removal. There’s work to be done here, and I don’t mean housework.
So after all of that, I felt pretty exhausted and down-hearted. From March to July this year things were pretty pear-shaped. What made everything infinitely worse was that the human factor seemed absent – I understand the restrictions of the health system pushed to breaking point but why does that have to go hand in hand with such coldness, lack of common sense and inability to listen? I was ready to throw the whole NHS out with the bathwater. Then, I discovered what I thought were signs of an infection. Reluctantly I went to see a GP – really I didn’t want to see another doctor for a long long time. But we never know what’s round the corner, and here I was greeted by an entirely unexpected experience, a doctor who listened, and who answered all my questions honestly. She took one look at me, straight through my liberally applied bronzer (if you don’t feel it, fake it) down to the ghostly pallor beneath, and although she’d never seen me before, she suggested I might be anaemic – a blood test showed that I was. In a 10-minute routine appointment, she restored my faith that there are good people behind the anonymous facade of the NHS after all. I so want to love the NHS, but it seemed that the concept and the practice had drifted apart irreconcilably. Then my faith that the human factor does exist was restored, and although somewhere deep down I knew it all along, I was well on the way to burying this knowledge under a growing pile of horrible experiences.
Anyway, I got through it. I’m on the road to recovery. ‘Recovery’ has always sounded to me like it’s a beachy place in Ireland, what with a road leading to it and all. Go on, try saying it with an Irish accent! My own personal recovery took a major leap forward not in Ireland, but in North Devon, of all places. Ages ago we booked a family holiday: 15 people from 4 countries, 4 generations aged between 3 and 75, 3 caravans. I hadn’t thought that I would be able to go, but then it turned out I could, and I was overjoyed. It happened to be my birthday that week, and, without wanting to make it sound too cheesy, it did feel like a new beginning, celebrating with my family, no us and them here, and that’s the most important thing. It made me sing in my head (luckily for everyone else not out loud, and in no way reflecting my taste in music, but sometimes meaning can be found in the unlikeliest of places!)
Don’t let it get you down
Everybody lives for love
Come and live a love supreme
Family holiday in Devon, July 2015
Song lyrics credit: Robbie Williams; Supreme
If you have a spare 20 mins or so, you can watch a video I made of our holiday by clicking here