30 Aug 2016

Not Normal

What is normal?
This isn't.

I got the kids' school stuff together. No stress, no panic, just sorted it out, tried it on them, put it away ready for next week. Back to school. Back to normal. Except it's not normal.

I went to see my in laws. The kids ran amok. We had a barbecue, I had a glass of wine. Everything normal. Nothing's normal.

I went to see my mum. Roast beef in the oven, nephews and nieces underfoot, sitting in the garden with Mum puffing on a cigarette, cookbook by her side. All as normal. Anything but.

The hospital runs, every week. Mum afraid, fed up, nauseous, worried, sick of waiting. The waiting. It goes on forever. We sit together, usually in a side room because Mum's too ill to sit up for long. Mum doesn't look when they do the blood tests, so I tell her when it's safe to look. I surreptitiously check her obs on the machine. Maybe I should have been a nurse. We wait for the consultant - she's lovely. We ask questions. No answers yet. They don't know where the primary site is. They are worried about the infection. No chemo til the infection's sorted. No oncology at all until the infection's sorted. They can't save Mum from the cancer. Can they even save her from the infection? We don't know. We wait for the blood tests. They do them while you wait, but it's still two hours. They return with the results. Usually bad news. Usually more worry. Usually no answers.

And yet that is when I feel most normal, most at peace. That is where I can cope. In the thick of it, surrounded by people who may not have the answers but know what they're talking about, who aren't afraid of what's happening and don't use euphemism. Where I'm with my mum, looking after my mum. Making myself feel better by making her feel better. I've always felt strangely at home in hospitals. Maybe I could have been a nurse.

I have nightmares where I fail to look after Mum, in some tiny insignificant way, but it ends up meaning everything, so I don't go to bed because I'm scared of dreaming. I see old people in the street and I resent them for being alive. I hear people bitch about their mums, and I want to scream because it's not fair. I see people being normal, being happy, being unaffected by strange crushing not-quite-grief and I wonder if I will ever feel like that again. All the peculiarities of human interaction, all the minor disagreements and trivialities of life, have lost resonance and meaning.

Mum was diagnosed a month ago today. It feels like it's been a thousand years and three hours all at once.

The only people I want to be with, household and parents aside, are my siblings because they know how this is. We all cope differently. We all feel the same. Thank god there's so many of us. Thank god we can be together.

I'm not writing for sympathy, or anything really other than to get this out. This feeling that nothing in the world feels normal anymore. Everything is wrong, like someone put a puzzle together higgeldy piggeldy and all the pieces fit but the picture doesn't make sense.

I love my mum. I wish I could keep her.

We are fundraising for Macmillan, because they are wonderful.

25 Aug 2016

When A Child Is Born

I've written up all my own birth stories, but this is the story of the first birth I watched.

My little sister Sooz was 38 weeks pregnant with her third baby when Mum first got ill, and it became very quickly obvious that Mum was not going to be able to be her birth partner this time. So I volunteered, since I'm unphased by blood and gore and Have Had Babies Before.

Naturally, being a Sooz-baby, this one took her sweet time and things eventually got going eleven days after her due date. Sooz decided to go and be in labour round Mum's house, so Mum could be included, while I waited for news. After receiving some text messages that made me do this:


I got a message saying she was ready to go to hospital. So I loitered in the road, awaiting collection, and off we went to the maternity unit.

The maternity unit clearly don't believe women who ring in saying they're in labour, and so we spent some time sitting in the waiting room. Well, we sat: Sooz marched up and down, stopping every couple of minutes for a contraction, and then carried on marching. This is what is known as an active labour, and it is excellent for getting labour established. Sooz, like me, finds contractions much easier to deal with standing or leaning into something, so we had lots of stops for her to cuddle the reception desk or the bookcase.
After about half an hour, we were called to triage and Sooz continued to march until they put her on the monitor. It's hard to know quite what to do with someone in labour. When she was marching, I rubbed her back through contractions, but when she was lying down there wasn't a lot I could do, so I just pathetically stroked her hair until she told me to bloody stop it. She started to need to poo, but since she only felt this when she had a contraction, it was fairly obvious to me that what she really needed was to have a baby. She was not convinced. We sent her beloved partner out because he looked like he was going to faint, and then she suddenly went intro transition. Transition, if you're not aware, is the part of labour when the cervix stops opening and the uterus begins to push, and for some reason it makes women go a bit mental - pleading to go home or trying to leave is very common. Sooz just demanded to have the monitor off because she wanted to march!
So, the midwife had a feel and discovered that Sooz was indeed ready to push and her waters were on the cusp of breaking. She ran off to find a room while Sooz started shrieking about how elated and euphoric she felt because she was going to have a baby. She waddled across the hall to her delivery room, got on the bed, her front waters went splat and began to push before the midwife had even got the computers loaded up. She didn't make a sound aside from a tiny bit of groaning when the baby crowned, and then behold! A baby girl on a tide of water!

We arrived at hospital at around 8:45pm, went to triage at 9:15pm, went to the delivery room at 9:40pm and Evie Jo was born at 9:54pm.

I cut the cord (in one cut, which impressed the midwife) and helped Sooz get her on the boob and then came the difficult delivery of the placenta. She had ragged membranes around the placenta, which isn't unusual in deliveries where the waters break as the baby's born, but they didn't spot it until after she haemorrhaged. Sooz does not appreciate being stitched after delivery, and although she only needed one stitch for a first degree tear, FREAKED OUT at the very IDEA of it. After having the baby without so much as a murmur and no pain relief, she was huffing entonox like a teenager at their first rave. And, betwixt freaking out and crying with pain, she rode the wave of high and SQUEALED about being BOLD. It was fucking hilarious. I cannot tell you how much I regret not having entonox for any of my deliveries.

The doctor sat at the business end, fishing out all of the clots and membranes (squeamish to watch, unbearable to experience), while Sooz alternated shrieks and giggles. Her partner sat with the baby looking bemused and I looked on with interest. They started her on a syntocinon infusion and then finally left her alone to feed the hungry gurl!
I left around 11:30pm, having done my duty and aware that the parents needed to enjoy their new baby alone.

Not before snuggles though

So, how did it compare to my own labours? After all, you would think that being sisters, we would be similar in how labour and delivery worked, and we both have three babies.

Well, first as far as pain management goes, we are similar. Neither of us have had pain relief in labour, preferring to use movement and positioning (I dance and squat, she marches) to deal with the pain. I have been stitched without pain relief each time, although now I kinda regret that, whereas Sooz always has entonox because she hates it. 
Sooz tends to go into labour shortly after having a show, whereas I have never had a normal show, and what I have had has been anything up to ten days before the baby. My labours are much shorter and sharper. Sooz tends to have early labour in the morning, active labour by teatime, baby at bedtime. With each baby, her waters have only properly gone at the end. For me, labour has started with my waters breaking and once the contractions have started, progressed extremely quickly. Now, whether I would have laboured more like Sooz if my waters hadn't broken first each time, I don't know. I'm not going to do it again to find out!
She is much, MUCH quieter than me. It's characteristic for women to be vocal in the final stages of labour: it's one of the main signs midwives look for. Sooz is almost silent, aside from tiny murmurs. I tend to scream and swear and yodel my way through.
Transition is different too. Sooz had a very definite break between transition and beginning to push. I need to push before and then during transition, so I don't get any break. I do experience the feeling of calm once transition has passed, but not for any length of time and certainly no euphoria. Boo.
The biggest difference is probably in terms of the third stage. The WORST stage for me, because my uterus goes into atony and needs rubbing up (such a vile thing) to get the placenta out even with the active management, then I haemorrhage and it's just a bloody mess. Sooz has had two simple third stages, although this one was more complicated because of the retained membrane and untreated anaemia. She did extremely well.

Watching her go through the predictable stages of labour then birth really reminded me of my own experiences. I remembered more viscerally the pain and stinging and waves of contractions and the relief of getting the head out watching her, than I ever could just thinking about it at home. I felt it with her. It's a hell of a thing to watch someone push a baby out, but I really enjoyed it. When everything in our family is tinged with sadness, this was a moment of total joy.

Sooz was an absolute hero; brave and bold and noble Sooz, and Evie is a beautiful little piglet.

23 Aug 2016

If

If we acknowledged that every time we saw someone, it could be the last.
If we put that much meaning and significance into every encounter, every quick chat, every hug.
If we recognised the ubiquity and unpredictability of death.
We would all go mad.

It's not sustainable. It's something we all unconsciously reject day in day out, because it is too painful. Imagine. There would be no such thing as a quick phone call, no such thing as 'just popping in', no such thing as a nod and a smile in Tesco. Every "see you later" would become racked with meaning and significance. We would all go mad.

My mum could have easily died three and a half weeks ago. In fact, protocol dictated that is what should have happened, but thankfully Mum's surgeon decided to turn a blind eye to the shadows on the xray and save her anyway. We consider this 'extra life' that she's been granted a huge boon, and we are so grateful to the team at Scarborough Hospital for doing us that enormous service. But it is not going to last long.

The greatest thing that has come out of it is that Mum can see how much she is loved. How deeply, how extensively she is loved. How many lives she has touched, how many people adore her and admire her. Too often we leave it too late to let people know how much we love them, tearfully gathering at the graveside with regrets, wondering years later why we never took the time when we had the time. You always think you will have more time.

Mum has the privilege of experiencing her posthumous tributes while she is still here to enjoy them, and she loves it. She has stopped batting away compliments.
Meanwhile, we have the privilege of being able to concentrate all our love and care on her as she has always given it to us.

This week, we have reunited with family we haven't seen in decades, and my mum is so overwhelmingly happy. It's a strange paradox, that this awful time makes us all so happy. Sometimes, I feel as though I'm full of wet sand and I can't breathe because I'm so afraid and so upset. Mostly, I am emotional yet joyful that Mum is still here, still baffling the doctors, still joking and giving out recipes, and making enormous lasagne, still full of love, still here. Still here.

I told my older children that Granny isn't going to get better yesterday, and that was difficult. Difficult enough, but when you have to take all the calming euphemism out of it for an autistic child, more difficult. And they told me that as long as we remember her, she will never leave us. I expect they heard it on a TV show, but they're right. We continue to make memories, (which is a phrase I FUCKING HATE under normal circumstances), to take photos, to be together while we can.

I don't really have a point today except to encourage you to tell your family you love them while you can. Maybe you already do tell them. Maybe you think they already know. Maybe you don't see them as often as you'd like. Maybe you don't have the words. Just tell them. Regret is so much more painful than embarrassment.

And please donate to Macmillan if you are able and want to do something help.


14 Aug 2016

Talking About Terminal Cancer

Behold, the shitty cancer awareness memes are going round on Facebook once more. Spread awareness with a heart in your status, say people who have probably never actually had to talk to people with cancer.
Conversations are a bit strange when someone you love has terminal cancer - gawd knows what it's like for someone who HAS terminal cancer. Here's a guide on how to talk to me, but I am not representative.

1. Please don't ask how my mum is unless you want the answer.
There isn't going to be a "Yeah, she's fantastic" response. If you can't deal with being told "Same" or "worse", please don't ask. There are other things we can talk about (see point 3).

2. Please don't ask, with any degree of intensity, how I am REALLY.
I don't know how I am 99% of the time. Somewhere vaguely between euphoric she's still alive and devastated at the sheer fucking awfulness of everything. If I tell you I'm fine, it either means I don't want to talk about it, or I actually AM FINE, as BIZARRE as that might seen.

3. Cancer gets boring
You'd never have thought the idea of losing someone you adore would get dull. In the first week after Mum was diagnosed, I think I had to explain it in detail to about ten people who weren't directly affected. Not because they were being nosy; they just couldn't fathom how This Could Happen, so they wanted detail. Painstaking, surgical detail at times. Being me, I was happy to give it, but LORD IT IS HARD and then it just gets boring. This is what our new reality is, but I am still the same person and I don't just want to talk about the scary thing that's happening.

4. Please don't tell me about anyone you know (or knew) with cancer, unless it's a parent or similarly close relative.
Thanks for the info, but I guessed cancer wasn't solely restricting itself to hurting my mum. I've lost two grandparents, my best friend from when I was five, and numerous other people to cancer. I know millions of people are afflicted. I know it's shit. I know it's vicious. I know it's unpredictable. It's also not an exercise in comparison.

5. Please don't tell me about people who Miraculously Recovered.
This is so unlikely and rare that I just find it annoying rather than comforting.

6. If you don't know how to deal with it, that's fine.
Honestly. I get it. Watching sad adverts on the telly and donating to everyone on Facebook's Race For Life pages is one thing. Actually being faced with the reality is terrifying. Maybe people think I will just sob uncontrollably into their shoulder, or be cross they asked how I am, or I dunno, have a full on nervo. I don't expect answers. I don't expect to feel magically better any time soon. If you don't know how to deal with it (or me), it's probably not your job to so please don't worry about it.

7. I know you don't know what to say
Unthinkable though it seems, the shoe has been on the other foot. I've been told people are terminally ill before, and not had a clue what to say. What can you say? There's no Please Die Nicely cards in Clintons. I know it's shit. It's fine to say it's shit.

8. Please don't offer help unless you are willing to give it
I know you want to help, but there's a vast difference between saying "If there's anything I can do" and actually looking after my children for seven hours. If you can, offer specific help. Lifts. Food. Company. Babysitting. That sort of thing. Otherwise, please donate to Macmillan for us, because they offer so much practical support, and take away some of the fear.

9. Don't hate me or take it personally if I'm grumpy or quiet or reclusive or angry or anything other than shitting sunbeams
I can't predict my mood. On the day I wrote this, I cried because people were nice, cried because Christmas might be shit, cried because everything in the future might be shit, shouted at the kids, had perfectly polite conversations with strangers, jumped out of my skin because someone knocked on the door, cried some more, text people until I was too tired to, and shouted some more. I am also still capable of pissing myself laughing, being extremely dark humoured, and full of love for everyone around me. I'm still a contrary, argumentative bitch. Mum's illness is like a knife to my heart every time I remember it, but death is a massive part of the fabric of life.

I don't hate cancer. I'm not going to start sharing those "99% of people don't hate cancer but I know you're not one of them" memes on facebook. Cancer is a terrifying prospect: the word alone scares the shit out of many people, but it is also part of the joy of living. Cancer is a cellular disease that we all carry the potential to develop. Our cells divide at a rate of around 50 billion PER DAY. It is a miracle to me that it doesn't go wrong all the time. Cancer is as old as humanity. There are thousands of different types: some kill you, some barely bother you. It is shit that Mum's developed a lethal kind, but at the same time, in the lottery of life, I think (and she thinks) that she's done OK out of it. All this love for her, all these amazing memories that we continue to make, all these Actual People She Has Made. Half of me is my mum. In every one of the billions of cells in my body, half the DNA telling that cell what to do is my mum. And my mum WOULD tell every one of my cells what to do.

9 Aug 2016

Mum

This blog has been written with the full consent of both my parents. My mum would love to read any (nice) comments or messages you would like to leave, either on here or twitter/facebook.

Food is inextricably linked to both memory and comfort. What's the best thing you've ever eaten? This isn't a question where the answer is likely to be "the tasting menu at The Fat Duck" or "lunch at Le Manoir aux Quat'Saisons" (though Lord knows I wish it was). This is likely to be a question where the answer is so personal it's almost secretive. An answer that requires all the senses and memory. An answer that won't necessarily tally up to anyone else's idea of a good meal.
Christmas dinner when I was about 7 and still believed in Santa, high on the magic of the thing, eating in the dining room by candlelight as it slowly got dark, with fairy lights and people everywhere. Every Christmas dinner for that matter, especially the one when my kids gave me a round of applause afterwards, even though most of it came from Messrs Marks and Spencer.
Soft beetroot sandwiches in the old van - not like a people carrier, but a Transit with seats bolted in the back, the only thing we'd all fit in - on the way to the seaside, where more beetroot sandwiches and squash awaited.
Chips in the back of that same van. Chips that I didn't like because, for some reason, I had a mortal hatred of them until I was about 14. I used to eat monstrosities like pineapple fritters to avoid the horror of chips. On holiday, we would sing all the way back to the caravan at the tops of our lungs, full of chips and warm coke from a sandy plastic cup.
Then later, much later, a massive cheese toastie, a kitkat and a pint of tea, after a night of illicit drinking down the Wellhead.

My mum's roast beef dinner, with all the trimmings and homemade cheese sauce. A meal to revive the soul. A meal I won't get to eat many more times.

My mummy is going to die.

We all know our parents will die. We have that factual knowledge, because that is what happens. Death is the trade off for life. Everyone dies, hopefully in a generational order. It is the right way of things. We reach adulthood under the care of our parents, and then the caring reverses (eventually) and we look after our parents as they die.
But really, we all think our parents are immortal. We think we will have them with us until we are old ourselves, and being old ourselves is such a distant concept that it translates to near-immortality. We've heard the statistics. We see the Macmillan cancer adverts on TV. We know so-and-so's daughter died of cancer when she was only 15, 25, or 40. But until it happens to you, you do not think your parents will die until YOU are ready for it to happen.

My mum found out she had cancer in an unusual, and quite dramatic way, after a few weeks of illness explained away by other causes. She says she's had a good idea about it for a while, but was afraid to get it confirmed. Afraid of the tests, and the internal prodding, and waiting for the results, and the grave consultations. So, instead, she waited until all hell broke loose within and found out off her merry head on morphine in an ICU, far from home. Her official diagnosis is metastatic ovarian cancer. She prefers to simply say she's dying. We don't know how long she has left yet.
But, we will have no false hope here. No platitudes. No denial. There will be no mad dashes to America for some bizarre, unproven treatment.

What we will do is look after her. My mum has had a lot of babies. Our ages range from 37 to 15. She has an army of carers, not least my wonderful dad. The joy of a big family is that when this happens, it's not one or two of you bleakly staring at each other over a deathbed; it's a platoon of you giggling over memories, being able to take over and stop each other getting too exhausted. It's a web of support that you don't need to go and look for, with different skills and styles of care. Mum doesn't want to be in hospital, surrounded by strangers. She wants to be at home with us, so she will be.

But back to food. My mum has been cooking professionally for years, mainly in care homes but also for weddings, parties, christenings and wakes. If you've been to a family 'do, you've probably eaten Mum's sandwiches. If you haven't, then you are Missing Out. Her illness has recently meant she's stopped enjoying food, because she hasn't been able to eat. She's even stopped thinking about food.
I can't think of my mum without thinking about food. This is a woman who's most common phrase is "GET OUT OF MY TRIANGLE", meaning sink/oven/surface. A woman who once, halfway through a family quiz, fell asleep until the question "How do you make a roux?" came up.  She opened her eyes, recited the ingredients, and went straight back to sleep. She taught me how to roast a chicken, how to poach eggs properly, and how to manage a kitchen. She has been bulk catering regularly since about 1990. She gave me my own obsession with cooking books - I used to read her hideous 80s cooking magazine collection as a small - and then plundered it to read herself.

I can't eat now. It's not exactly grief because she's not dead, and we shouldn't waste our time wailing about her being dead until she actually is. It's a grief for the future that would have been, if this disease hadn't happened. It's a selfish grief for the imminent  loss of such a wealth of advice (particularly with parenting) and love and care. It's fear. It's a little disbelief because how? She's 54. I thought I might get another twenty years, at least. I can't imagine myself without her.

Let me tell you something about my mummy. She is as strong as an ox. She has given birth to eight babies (my tiny brother Thomas didn't make it) and never had pain relief - one of us weighed nearly 11lb. She has had this cancer for an unknown amount of time, long enough for it to really take hold, and carried on working full time and caring for her home and children. She has coped with her parents dying, with having all these children, with all our dramas - god there's been some dramas -with faith and humour. She has had an acute life-threatening illness and dangerous operation that would have killed less hardy people and sailed through it. She laid in her hospital bed, still very physically unwell, bitching merrily about everything, expecting my dad to be psychic, totally her normal self (aside from immediately after morphine when she started asking about Uboats and hearing tingling). She has taken this awful news on the chin, with black jokes and sorrow and love. She says she's not strong. She says she's not brave. She says she's a coward or she would have gone and got it sorted out before. She is wrong. My mum is being strong and brave and an example to us all.

Mum has requested that, if you feel inclined to do something and can afford to, that you please donate to Macmillan Cancer Support through this link. They are truly being wonderful at the moment.



5 Aug 2016

Postgrad

I had a strange sense of instability and loss when I finished my degree. I'd had this idea for quite a while that IF I did well, I would do a masters. But when I actually did well, I felt completely different. A masters felt suddenly terrifying and enormous.I didn't feel clever enough to do one. I didn't feel I possessed the right skills to switch to history after four years of mainly sociology and biology. I emailed the OU to ask them what preparatory work they would advise. They actually advise a bridging course, held by Oxford University online, which costs the princely sum of £2500. I knew I couldn't afford that, and I told them so. I did, however, buy all the set texts from it in a bid to teach myself.

After some time, I received an email telling me to run through a pre-assessment to see if I had any of the right skills and broad knowledge, and to buy the main set text from the previous year to go through.

I did the pre-assessment, not expecting to do well. I got 98%.

The next step was funding the thing. As previously mentioned, my BSc cost me £5, but fortunately the government are allowing postgraduate student loans for masters courses starting this September onwards. I applied online - a very simply process, provided you know how much money you want - and then thought about how I was going to pay for the first module since I won't get any loan money until my first instalment in October but you have to pay for your modules up front.

My first idea was to put it on a credit card, but no credit card company will lend me that much cash (£3800) in one go, so I thought about a loan. The lowest APR I could get was 10%, so I looked into OUSBA loans. These are loans from the OU that you pay back over the course of your module at a fixed APR of 5%. It is, unless you can afford to pay up front, a really good way to pay for modules even with a student loan. You apply through the OU, at the same time as registering for a module. It's a swift, online process and you usually get a decision immediately.


I was accepted onto the masters course last Friday, when all hell broke loose with(in) my mummy, and I will blog about that soon. I don't even know if I want to do it now, with everything else going on, but at the same time, studying has been my lifeline, my structure and my main distraction over much other stuff over the last few years. And I know Mum wants me to get to writing my great body of historical work, so I'm doing it for her now as much as myself.