Number 23

If blog posts were paintings, then this would be more of a Pollock than a Pasternak.

[Stands back and examines first sentence. Finds it poncy and presumptuous. Decides to make another attempt.]

If blog posts were pizzas, then this would be more pavement pizza than prosciutto di Parma.

[Stands back again. Realises she has unwittingly equated the life’s work of a world-renowned artist to puke. And she’s also somehow become fixated on the letter p. Decides to press on – dammit, I mean: decides to just sodding well get on with it.]

Everything’s been so befuddled lately. I’ve wanted to write but I haven’t been able to articulate very much inside my own mind, let alone on the page. I could try to pass off this blog post as an attempt at stream of consciousness; but there’s no point in pretending that this is anything more than arbitrary dribbling. Ah well. Dribbling will have to suffice for now. 

One of the difficulties has been these damn headaches. Every day. They’re distracting and more than a little inconvenient. The doctor said I should keep a ‘headache diary’ and get an eye test too, just in case. Progress so far: my headache diary is highly repetitive, and my eyes are fine. So; one of those things is a win, at least.

Another problem was that the initial success of decapeptyl in improving my endo symptoms was totally erased by two debilitating weeks of sinusitis. I hadn’t experienced it before and the pain was so severe initially that I thought I would need to have a tooth pulled (the tooth in question was already a troublemaker). Even after the second course of antibiotics had nuked the sinusitis, my strength was almost completely sapped.

At some point, in conversation with a different doctor, he made a comment along the lines of, what a trying couple of years it’s been. That’s OK, I quipped, I’ve slept through most of it. He asked me to repeat myself. Twice. I repeated the exact same sentence. Twice. Despite the danger lurking in his tone of voice. Fuckssake, I’m not stupid. I know what you’re getting at: if I’m in pain all the time and it’s disturbing my sleep, then how can I say I’ve slept through most of the past two years? Listen, Doctor, if you don’t get that, then I can’t help you. That’s what I do. I sleep and I take painkillers. When the pain interrupts my sleep, I take stronger painkillers. When I have an appointment coming up, for myself or my Mum, I sleep more and take more painkillers. Then, afterwards, I typically need 24-36 hours of rest and sleep, to recoup the energy I’ve expended. That’s what I do.

In between, there was also a letter from the gynaecologist, informing me that my ovarian cyst, that was first detected when I was hospitalised in April, had grown and was now classed as “large”. She asked me to arrange a CA125 blood test and advised me to expect a further ultrasound scan. In the days leading up to the blood test, I wondered if I had cancer. My husband was going through some stress of his own; so, I made light of my fears to him, and instead confided in one friend I knew I could trust. In doing so, knowing some of what she has been through in recent times, I was ashamed. But she did not let me down, and it helped me to share the burden. Eventually, the result came back normal and I was relieved, but I remained, and still am, confused and frustrated: why am I so weak? What’s the cause of all these dizzy spells? What about the other things, such as the bloating, the nausea and the fluctuating appetite?

One of the things you get used to as an endo warrior is that your results are always normal. My eyes are normal. My blood pressure is normal. My iron levels are normal. Everything else in my blood (which has been tested so much it should have a PhD) is normal. My scans are normal. (Except that there is now this cyst.) According to my results, I should be skipping through middle age, the picture of good health. Except I’m not.

I contacted the gynaecologist for help. Based on the initial success of the decapeptyl injections in stabilising my endo symptoms, plus the presence of the cyst, she advised that a total hysterectomy with bilateral salpingectomy and oophorectomy (translation: everything out) was a reasonable course of action, and she put me forward for the surgery. I’m fine with that – I’ve never seen the point of my reproductive organs anyway. I did iron out one niggle with the endo nurse though: why remove the uterus, if the ovaries are the culprit? Because removal of the uterus will determine conclusively whether you also have adenomyosis* (and, by default, cure it), she said. I’m OK with that – in fact, it sounds like a potential win-win. I hope so, anyway.

In the meantime, after getting over the sinusitis, I’ve been disappointed not to regain the energy and brightness that the decapeptyl gave me initially. Faced with having to take Mum to hospital for an outpatient procedure (my brother was not able to), I had to swallow my pride (along with the knowledge of the extra financial cost) and ask her carer to accompany us, as I can no longer do the physical handling of Mum by myself. (There had been some recent touch-and-go moments involving me, Mum in her wheelchair, and a gentle incline. God I hope she doesn’t read this.) As I typed the email to the care team leader, requesting that the carer’s shift be reinstated because I needed help, I struggled not to cry with sheer frustration.

What about now? The endo pain makes me walk with a slight limp. I tire very easily. Ridiculously easily. I’ve yet again adjusted the pattern of my days, to try to get the most out of the energy I do have. The urinary symptoms that plagued me before last year’s surgery have returned. I still do stuff, like enjoying days out and nights off with my husband, or spending time with family. If I see friends and acquaintances, it’s a real pleasure. Very occasionally, someone will comment that I don’t look unwell, which is a nice compliment to receive, and I’m sure is meant as such. If anyone – anyone at all – has their doubts, that doesn’t bother me in the slightest. Consciously looking ill, or acting ill, is utterly pointless, vain, dishonest, and wastes time that should be spent enjoying, giving and sharing.

Looking ahead, there’s the hysterectomy, along with the other -ectomies, plus a good old slash and burn of the endometriosis that’s grown back since last year’s surgery. Unfortunately for me though, Covid-19 is still stalking the streets like a giant stalking thing (to paraphrase Blackadder); plus, the economy is bellyflopping, public services are struggling, and winter is approaching. I’ve been told that the -ectomies will definitely not happen this year. I should count my blessings – a friend recently told me that her hernia operation will also not happen this year. Nor next year. Nor the year after that.

*Adenomyosis is sometimes dubbed the ‘cousin’ of endometriosis and occurs within the uterine wall, rather than outside of the uterus. If you’d like more information on adenomyosis, you could visit https://www.endometriosis-uk.org/adenomyosis-and-endometriosis .