26 Mar 2017

Mother's Day

Mothering Sunday, to give it its proper title, marks the halfway point of Lent. The halfway point of the slog through the days of denial, of sacrifice, of fasting. The day where the end draws into sight, the joys of Easter just over the hill. The day when you should visit your home parish, your mother church, and historically, for many young men and women away in domestic or farming service, your mother.
Of course, fewer people observe Lent each year and the original point of Mothering Sunday is lost in a sea of greetings cards, floral bumf, and internet offers. Just this week, the internet has suggested I should buy my mum flowers, clothes, wine, gig tickets, and cookies.
I would buy her a book. A book of social history, or food, or better still, a mix of both. A book she wouldn't have seen in her semi-regular trips to the shop, or advertised in Sainsbury's magazine. I would buy her a book I know she would love, the sort that she would take to bed, packet of crisps in one hand, book in the other. I would buy her something like the history of the playground I saw in Jarrolds on her birthday, that made my heart hurt with longing that I would never get to give it to her.
I would buy her a card and I would write how grateful I am, and how much I love her, and hope somehow that words would be enough. I would take it round, and all her cards from all her seven children would be lined up in a row on the windowsill, and she'd be nagging my dad to go and see his mother before it got any later, and tea would be prepared, and she would be content.
That is what I would do if I still had a mother.

But I don't. And I don't like today. Today hurts.

When your mother dies, you don't merely grieve for the person. The wonderful, hilarious, intelligent woman I grew up with, who was my guardian, my educator, sculptor of my life and my personality, my friend. How I grieve for her. Her phone number in my 'last called' contacts falls further and further down the list and will never come back up. Her things are still where she left them at home, but they don't move a few inches to the left or right, the way things do when they are in use. I still expect to see her when I go in my dad's garden. I call it my dad's now - it was always "mum's house". Although we have inherited the look of her, her voice and her image are now only in recordings. The smell of her lingers in her clothes, but it will never be replenished.

In a million tiny pinpricks and sledgehammers of pain, I grieve for Jo, a woman who happened to be my mum, who was hundreds of things to hundreds of people.

But I grieve for the loss of my mother, for the loss of a mother's love, for the loss of a mother's guidance. For the loss of the person who was there first, who recognised my presence before I had a brain, who felt my first fledgling movements, and who knew me best. For the loss of the stability and foundation you only have through good parenting, through good grounding. Many people are not lucky enough to experience this type of attachment, but I did. We did.

I feel at sea: lost and abandoned and young and frightened. The fear on a child's face when they lose their mother in a shop momentarily, only magnified. When I was little, I was plagued by nightmares, and I would pad up to my parents' room and try and wake my mum up to tell her. She would rarely manage to wake up - poor woman was shattered - so I would sit by her head, and snuggle in to her until I felt safe enough to go silently back to bed. And that is what I long to do, to go and snuggle up to her for a bit until I feel safe enough to go back into the world.

Five months tomorrow. I feel like it has been five years and five minutes. But what really bothers me is that this is for always. That she won't come back. I can't have her back. Maybe if I wait a really long time, and be a really good girl, maybe we will be back together. Maybe.

When Mum was dying, she said she didn't mind dying herself, but she minded terribly about how it would affect us. She knew what it would do to us. I didn't mind Mum dying too much in the end. It felt very natural for her to die. It felt very unnatural to try and prolong her life. There comes a point when it doesn't feel wrong anymore, much as when you are pregnant, there comes a point where you really want it to all be over. So many parallels between entering and leaving the world.

But this grief, this all consuming and powerful grief: that's something to mind. That's something to tear you apart. Particularly on Mother's Day.

10 Mar 2017

My Chemical Menopause

I was diagnosed with endometriosis last August, after an ultrasound scan showed that my ovary and bowel were sticking together within. That's an...unpleasant mental image, but bear with me, it gets worse. I had a diagnostic laparoscopy in November to confirm the diagnosis, and my surgeon found various patches of endometriosis around my left ovary. He BURNED THEM OFF. After two uncomfortable weeks of healing, I ovulated on the right, and all was well. The following month, I ovulated on my left side and it quickly became apparent that if anything, the surgery had made it worse. And I did DESPAIR.
I returned to see my gynae a couple of weeks after that and explained that it seemed not to have worked. I have wanted my ovaries removed since my mum died. The combination of her Unusual Pathology Ovarian Cancer and my endometriosis rendering ovulation unbearable seemed to suggest that just being shot of them would be helpful. A preventative measure, if you will. But my gynae was unconvinced that the pain I've been having was caused by endometriosis.

Let me tell you of endometriosis. A uterus is lined with endometrium. This is what nourishes an embryo until the placenta develops, so it builds up every month and should no embryo appear, out it comes as a period. Yes ladies, that is your body complaining vigorously that it BUILT THIS NURSERY AND NOW THERE'S NO DAMN BABY. With endometriosis, the endometrium has gone walkabout. It's still lining the uterus, but it also pops up in strange places. It can go anywhere, even your lungs, although generally around your pelvis, and it comes back even when it's been cut or burned away. As it swells each month and then bleeds, it can get in the way of fertility, cause immense pain and bizarre periods. It's like a harmless cancer that nobody quite fathoms. Until you get it, and every ovulation has you screaming in agony, vomiting and crapping yourself for a week. I told you it gets worse. I would rather have ten massive babies than ovulate.

And so, my gynae had a plan. A plan to prove whether my pain was caused by endometriosis or...gulp...birth injury. To my bowel. Eeeesh. And to prove this, he would give me the gift of menopause.
I was...a bit surprised. A bit terrified. A lot terrified, actually. You see, to give a woman of 31 the menopause requires injections. Four-weekly, implanted and irreversible injections. No deciding eight days in to say fuck it, this is shit, and stop.  The injections are a drug called goserelin, more commonly known as Zoladex, which is usually used to help treat prostate cancer in men and breast cancer in women. Zoladex flattens your oestrogen and testosterone production by overstimulating production, so your brain thinks it doesn't need to make those hormones anymore. Your ovaries stop. You are menopausal. Woop.
Now, the nice thing about Zoladex is that it does wear off, so I wasn't facing menopause forever, just for six months to see if it fixed my abdo pain. And if it did, then hurrah. If not, on to more clinics and tests. So, I decided to give it a go.

This is my diary of The First Month of Going Through The Menopause Really Really Quickly, Long Before Biology Dictated I Should: 

Two Weeks Before
I don't know why I'm so scared. I'm getting exactly what I wanted - no ovarian use and HRT - but in a nice reversible way, so if it doesn't work, I've still got my innards and haven't had to have more surgery. But...the menopause. That's a scary thing, right? I'm going to turn into a flame-breathing, sexless dragon. My boobs will shrink and I'll get fat(ter) and I'll break all my bones. I'm not bothered about hot flushes, because it's FUCKING FREEZING, so it'll be nice to be warm. But I am worried about being a flame-breathing sexless dragon. I have already told the children I might be a bit cross for a few months. And poor Alex has no idea his booby is about to vanish - another side effect of being an old woman, biologically speaking. Also, I am slightly irritated to learn that I could still get pregnant despite having dead ovaries. I suppose having no sex drive ever again will be an adequate contraception *wails into wine bucket*

A Week Before
I wish I could talk to Mum about this. Mum would have loathed the very idea of it. She would have shrieked about how she'd suffered all her life, and hormones could give you cancer (the irony!), and you shouldn't mess around with these things. That was Mum's philosophy on reproduction - let it sort itself out. Part of the reason her cancer wasn't diagnosed for so long was because she ignored her ovarian symptoms as 'normal'. That's part of the reason I want to try this out. I don't want to ignore the symptoms of (potential) cancer. I don't want to live half the rest of my fertile life in pain, and the other half waiting for pain. It's just not right.

Still A Week Before
I saw a lovely GP today, who told me that I only really have to use Zoladex for a few months and if it doesn't help the pain, I can stop. That's a relief. She prescribed everything for me, including tasty HRT and now it's just a matter of waiting for the appointment. I am nervous. I have booked it to go in on Valentine's Day because nothing says I love you like being neutered.

The Day Before
Last night, I dreamt my mum told me that getting Zoladex would tear my life apart and I was being a twat getting it. So, thanks, subconscious ghost of Mum. I'm so anxious. But resigned. I'm dreading speed-weaning Alex, but he's infinitely less bothered about breastfeeding than his brothers were. I will miss feeding him. I've been pregnant, breastfeeding, or trying to get pregnant for eight and a half years, and I will miss that part of my identity. I knew this day would come, of course, but not as a side effect of medication.

The Day Itself
I had it put in this morning. It's not a bothersome procedure. I was anticipating an ENORMOUS needle, but it's really not - just a scratch, then a slight pressure. It's in my stomach, just under my navel in my nice soft STRETCHMARKS. The implant is the size of a grain of rice, and it dissolves over time, so no need for painful removal. The nurse assured me I wouldn't start feeling anything for a while. She was wrong. Two and a half hours later, and the pain I associate most with the endometriosis set in, gnawing and clawing down my back and hip. It's now been four hours and I feel hot, dry-mouthed, sickly and like I'm about to have a massive period. Lord knows what tomorrow will bring.

Two Days On
Still got awful pain. It better bloody piss off soon. Otherwise, I've settled down a bit - hot flushes and headaches seem to alternate, but don't last long. I've still got the driest of mouths. I have no libido. Not even a little bit. I was expecting HAEMORRHAGIC FLOODING but I haven't bled either. I feel rather calm, really. I thought I would be furious. My breastmilk is more or less gone, much to Alex's sobbing distress last night, but he slept great last night regardless. Actually, so did I. I haven't slept well since I was pregnant with him, over two years ago now, and the last two nights I have slept like the Actual Dead. Who knew sleep could be influenced by oestrogen?

One Week Later
I have survived the first week. It's not helped my pain. I mean, the cyclical element has gone - my period would normally be due around now and I've had nothing related to that, but the general post-coital and random bursts of crippling pain are still there. I've had no bleeding at all, which I wasn't expecting. I haven't started HRT yet, because I'm a bit scared of the potential side effects, but I think I will soon. See, I feel alright, but I also feel entirely dead inside, and I feel like this is a bit...much to be honest. Chemical castration is all very well until it makes you feel like you're in a weird emotional void. And my skin is FUCKING AWFUL, so there's that. Hot flushes are intermittent and a bit like the build up to a fainting fit, which is EXCITING. I've had a lot of headaches though. I've decided to have two months of treatment total and, if there's no effect on the pain after that, then fuck it.

Eleven Days In
I started HRT yesterday in an effort to beat the migrainous headaches. It worked. It has also made me bleed. I grow weary of side effects. I know it's to be expected when you fuck with your reproductive system (as, my mother shakes her head from heaven) but I can't drink alcohol because I'll lose bone density, I still have to use contraception, and I'm still experiencing the same pain I went on the medication to try and fix. So. Yeah. And I'm spottier than I have ever been in my LIFE. I look LEPROUS.

Twenty Four Days Later
Right, so, the verdict after (almost) month one?
Obviously, it took a while to settle in. I started HRT, promptly BLED LIKE CARRIE AT PROM, and then felt awful because of the sudden anaemia. And then...normality. I feel...normal. I feel fucking GREAT. No pain, no nausea, no diarrhoea, no problems after eating dairy, no spots, no hot flushes. My mood is fine, I no longer feel dead inside. I feel a bit more aggressive, and I get cross occasionally, but I always HAVE been FURIOUS, so that's fine. The only real issue is headaches, but they're not too bad or too often. Also, dry skin, but that's nothing I can't manage. I cannot tell you the difference no pain has had on my life. I actually get stuff done. I don't spend four hours trying to wake up because I have such severe abdo and back pain. I haven't shit myself in weeks. I am going to continue treatment and hopefully it will continue to be alright. I still have minor symptoms. It still hurts after sex, but not in the prolonged and disabling way it did. This means I may have some birth injury as well as endometriosis. But taking my cycle away has been amazing thus far.

Of course, I can't stay on zoladex forever. Even in cancer patients, it's not licensed for long term use. I can stay on it for six months, which chimes in nicely with my next gynae appointment. HRT also has risks, namely of breast cancer and uterine cancer - the one I'm on is more typically used for women who have already had a hysterectomy. It would be ironic indeed if the medication I'm taking to stop my ovaries wrecking my life killed me with uterine cancer.
If it continues to work, the logical next step is an oopherectomy - having my ovaries out - which is usually done with a hysterectomy. And that scares the crap out of me, however little I want my reproductive organs. But that's a bridge to cross when I come to it.

It is Endometriosis Awareness Week. 10% of British women have endometriosis, and many of them will be fobbed off by their GP, told it's just 'women's problems', told that since they're not permanently anaemic, it's not a problem. Many of them will suffer unexplained infertility, and if they're among the group of women who have severe endometriosis with little pain, may not consider their own uterine tissue is choking their fallopian tubes. Some won't realise that their digestive and urinary issues might be caused by their uterus, particularly if they haven't had kids yet. My own GP only referred me to gynae because I insisted on it, otherwise I would still be struggling with two weeks of severe pain out of every four. It takes seven years, on average, to get diagnosed. I was incredibly lucky to be diagnosed within six months of first going to the GP, although I have been living with steadily worsening periods and pain since I was 15. I thought it was just normal. It's not, and you don't have to put up with it.