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Tuesday, 19 May 2015

today

Dad has gone into hospice for a couple of days so that someone professional can observe his partial seizures and episodes of what we call the spins and adjust his medication accordingly. He's been in a better head space (ha, for want of a better term) than he was when I last posted 9 days ago, but this business of dying is awful.

Monday night was really scary. For hours there was something wrong - he was struggling to master control over the words and thoughts in his head, slurring out "you know I love you very much" and hitting the reset button every 5-10 minutes, following which we'd have to go through another round of explaining what we thought was happening, what we were doing about it, what he'd taken. It scared us so much that when the hospice visit was suggested yesterday, Dad could see Mum and I were eager.  The transfer yesterday was rough, and he spun for most of the afternoon, the doctor there to observe and confirm what we'd been seeing (and asking for help with).

I'm back at Mum and Dad's kitchen table, watching the cat sniff a dead mouse it killed earlier out the window. I have a plane ticket to Auckland this afternoon and another back for the weekend on Saturday. The two days in Auckland are for me to attend antenatal class and keep up with a little personal admin (my husband, my home, my preparation for baby).  The scan last week went well; my placenta has moved and is in a good position and the measurements suggest we'll have a good sized newborn on our hands (90th percentile head circumference, oh dear god). That's one less worry but I've been having terrible stress dreams about broken babies, losing babies and so on. My back is starting to really ache by the end of the day and the reflux is getting worse.

I've said it before but it's killing me to want to be in two places at once. I told Mum yesterday how it feels everytime someone asks her or comments that her daughters live in Auckland. It's not my fault and it's not my parents' fault that we live this far apart, but it's fucking killing me to hear how Mum needs more practical help and is (reading between the lines) scared about what happens when the pregnancy or birth prevents me from travelling any more.

Monday, 11 May 2015

tui

The tui is back. He's been gone for a little while, but just now I heard his liquid song for the first time in a couple of weeks. I'm glad he's here.

Prince Harry is touring New Zealand, watching rugby and visiting Stewart Island, the site of our last whole family holiday at Christmas 2013. I'm so glad we went on that trip. I enjoyed it at the time (my god, the number of tui we saw there!) and I'm even happier we went now. There's a new poignance to the memory of the walk just Dad and I took to the far edge of Half Moon Bay, where we climbed up a rock and watched the waves of Foveaux Straight demolish themselves over and over and over again. 

I went home on Thursday afternoon and returned again this morning. The trip home was nice (I love my husband & my cats, of course) but I was on edge the whole time. We were at a christening yesterday and there was discussion of the death of an elderly relative of the baby -- I couldn't bear the platitudes, even though I know that for her relatives in those circumstances all the platitudes were helpful and probably based in truth.   I thought of my father, sitting in his room, articulating as best he could to the doctor that he wouldn't let his cattle be treated this way.

P spoke to his mother last night for Mother's Day. She lives in the northern hemisphere, so hasn't necessarily been privy to the detail of what's happening with my family. She asked after Dad and as I heard P underplay the situation a little I filled with rage. Absolutely impotent -- there's no benefit in being as bald as I would like about it (he's dying, it's shit, there's fuck all we can do would hurt P's mother unnecessarily when we can just say that it's not looking good) and P had no idea how I felt. I've stopped wanting people to ask how I am because I cry and I don't want to. I've stopped wanting people to ask how he is because I find I can only spill the unvarnished truth or else risk feeling like a fraud, I suppose. 

More backwards and forwards over the next two weeks. I'm going to need a travel dispensation from my midwife when I see her on Thursday as I'm starting to get looked at with raised eyebrows on the plane. My back aches from time to time and the baby is very active now.  I have woken with leaks from both breasts. Eight and a half weeks until my due date, less than six until term.  I'm struggling to picture life beyond next week and I'm tamping down (ha, tightly compressing more like) worries about what happens when the baby arrives.  

In the interim, I take pleasure from the tui's song.

Tuesday, 5 May 2015

wednesday morning, may

I am sitting at my parents' kitchen table. The sun is out and the leaves are still turning.  While the cherry is almost bare, the wisteria is still quite green and the poplars yellow. It is crisp in the shade but much of the farm is in direct morning sun, verdant.

Dad is down the hall in bed. He doesn't leave the bed now, though this morning he was well enough to sit up for breakfast (a change from the hideousness of previous days). I have been here for 5 days now and I am witnessing the end of life. It is a terrible suspension. Dad is not generally in pain, but he's fighting the progression of the disease inside his head, the foggiest and the swirliness (as he describes it) a challenge he feels he ought to be able to face (I mean, he's always been able to figure it all out, right?)  He's terribly tired all the time. He's ready to leave.

Why couldn't I type 'ready to die' just then?

If we had known what the end would look like, I think we might have all been paralysed by fear in the early days of this (ha, early days. It's not even been five months since his diagnosis).  I don't mean to scaremonger, while cancer and end of life have their general commonalities, your experience will differ, I'm sure. Mum and I are petrified about what the next days and weeks hold though, now.  All this advancement, civilisation, and end of life can still be a ghastly, drawn out process.

It's generally calm.  Dad rests or sleeps, we prepare the next meal, tidy up, make necessary phone calls to hospice, occupational therapists, home caring agencies. Occasionally there are moments of difficulty. We cry from time to time. The baby kicks restlessly while I am in bed or on the couch.

I go home for four days from tomorrow. I have an antenatal class, a scan appointment I shouldn't miss. I'm rescheduling the midwife on Monday to return. I feel terribly conflicted about it. My aunt and then my sister will be visiting over those four days so I'm not leaving them alone, but what if? I'm looking forward to the respite too, which is even more awful.

P joined us from Saturday to Monday afternoon and was very helpful. Dad cried when he left, and I know why. P told Dad he loved him.

So.

Thursday, 30 April 2015

inevitable

My very good friend M, who has been a saint the past few months,* asked me today if I thought I'd got closer to acceptance.  She's right, I suppose. 

Dad is home now.  The clot could kill him any time, a new clot could occur and kill him any time and the tumour will kill him eventually.  I don't think he's pursuing any more treatments.  He wants to be comfortable.  I have no idea what that means in terms of time frame.  I suspect the worst. 

M asked me if I was going to open the envelope to share the sex/identity of the baby with Dad.  That's faded to a triviality right now.  I don't think he needs to know who the baby is; he knows he would have loved him or her. It might simply be a reminder of what he won't get to experience. 

He has a wheelchair.  I've just bought the player for his books on CD.  There's a ramp.  Mum will need home help, though their farm is too distant from town to automatically qualify for the usual assistance.  He doesn't feel great today, but was happy to be home.

I'm so glad I'm going to be with them from Saturday.  It can't come soon enough. 

* I couldn't ask for a better friend -- she's helped me process tonnes of shit, all the while quietly undergoing shit of her own, I just learned. 

Tuesday, 28 April 2015

the best laid plans, awry

It'd been about three weeks since Dad was last admitted to hospital, so it shouldn't have come as a surprise when he was picked up by the ambulance again on Friday night.  The long weekend stretched ahead, unnerving and quiet, watching the phone.  I stayed at home until Sunday, when Mum called to say the blood thinners appeared to have given Dad a stroke.  She was terribly upset and we made the executive decision - I was on a plane within 90 minutes and at the hospital about three hours after her call. 

Again, we went through the cycle of godawful followed by euphoric with improvement followed by comedown on realisation that the new normal appears to be not as good as the normal of three days ago.  I could write details of a possible stroke, recovery of the right hand side of his body, a deep vein thrombosis, swelling, scans, Dad's latest symptoms -- all in the name of charting the progression of the disease that is stealing him from us.  Who knows, maybe in future I'll want to remember this, to be able to individually recall the hospitalisation episodes and what happened when.  But I suspect that all that will be important and remembered are the conversations with Mum which broke my heart (she feels she's lost him already and I'm not going to say she's wrong), the few laughs I elicited from Dad, the tiredness with which he faces the world, the loss of some of the words he was looking for. 

My sister K retreats a little further.  She held off coming, until we knew more about the prognosis.  She's talking about visiting on Queen's Birthday weekend, 1 June, when she has four days off.  That's a month away.  I thought last night about Dad a month ago.  She's probably well aware of this, but the difference between Dad a month ago and Dad today is not insignificant.  There is risk in leaving it another month.  That's not to say that she has to respond in the way that I do -- I hunger for time, I greedily hoard and soak it up, returning to my husband to grieve.  She doesn't process in the same way I do, nor does she share the privilege of having a P to ease the burden and shoulder her grief.  But I find I can't stay quiet when I suspect that she might live to regret her decisions.  I need to find the balance, a way to speak to her. 

A acquaintance's 61 year old father-in-law passed away suddenly over the weekend.  I won't go into detail (it's a public death, due to the circumstances), but she too is pregnant and P knows both her husband and his recently deceased father.  The horror and the grief must be enormous for them.  Selfishly, my heart screamed when I heard, envious and terrified - at least it was fast, at least it was a quiet, gentle death.  There's no way to compare, there just isn't.  I was lucky enough to have six wonderful weeks with Dad, in person and over the phone, between diagnosis and the first real downhill run, knowing that time was finite.  But oh my god, I'm not sure I wouldn't trade it for the knowledge that he doesn't have to suffer this way, that Mum doesn't have to live in this extended, surreal, awful existence wherein she feels he's shut down emotionally and is going through the motions, no longer available to her.   I saw it last weekend, and wondered whether it was the burden of caring for him that was causing her to pull away. But now I know better.

I probably don't mean that I'd prefer a quick loss.  I'll probably look back and be so grateful for the moments that are scorched in my brain - sitting at the kitchen table, watching him scarf a cake I'd baked with chocolate ganache, the late summer sunshine falling on his face.  Sitting outside at the table commenting on the peace, the view, the sunset.  Watching him instruct P in use of the circular saw, holding the pieces of ply in the garage for P to cut.  Sitting on the couch with feet tucked away to one side, holding his toes.  His 'yeah-hear-hears' of excitement, burbling up from his chest.

Dad's eyesight is failing.  Before the hospitalisation, Mum sat on the couch, he on a chair on the opposite side of the coffee table.  She was crying, and he couldn't make out her features to know what was going on.  Christ, that kills me. 

Thursday, 23 April 2015

my plan for the next two or so months

Hi, still here. 

I've made the call to be done with work and spend time with Dad.  Last day is Friday next week.  The stress of not keeping up with my job, worry about letting people down and feeling torn that I needed to be with Mum and Dad outweighed the financial need in the end.  Work's been great, so understanding.  After the last episode with Dad, I just couldn't get back into it and work was no longer the distraction I'd appreciated in the early days of all of this.  Still feel like I'm leaving people in the lurch, but I just can't do it anymore.

Dad's back on chemo.  It's not great.  At least he was more himself mentally when I saw him last weekend, even if very physically limited.  The new nagging worry at the back of my brain is that we're all distancing ourselves from him and he from us.  On his part, it's likely just focussing on those things he absolutely needs to, because his mental and physical energy is finite and very, very limited these days.  On our part, is it fear and/or an unhealthy sense of self-preservation?  Self-preservation is a good thing, don't get me wrong, but I don't think that's the right way to go about it.  When we're there next on the 2nd, I'm going to make the effort to touch him more (for me, the distancing has been physical).  I know Mum's been sick, so keeping her distance is wise, but I heard less use of their terms of endearment over the weekend.  She's very tired too. 

I'm 29 weeks today and we've finally sorted out a load of baby stuff.  I've been offered my pick of the nice and barely used things belonging to a daughter-in-law of Mum's friend and we've just got to agree a price and pick up.  Our room is now inhabitable and the baby's room gets demolished this weekend.  Within eight weeks, it should be habitable.  We hope.  Oh god do we hope!  I bought another load of maternity clothing (a second pair of jeans, a top and jersey that double as nursing items and a dress) that I hope will last me through the end of the pregnancy.  I can buy more long singlets, I suppose, if required.  We start ante-natal classes tonight. 

I'll drive down for time with Mum and Dad in May while I still can, in addition to the flights I already have booked.  It's a five and a half hour drive at least, plus stops.  I don't imagine I'm going to be keen on that much longer, given my size and the fact I usually get a sore back when driving for more than a couple of hours at a time. 

2015 is slipping away into a morass of practical arrangements, the fall punctuated by moments of heartbreak. 

Tuesday, 14 April 2015

pollyanna

Do you know, I've been cheerful today.  I mean, what the fuck is that? I'd forgotten a bit what cheerful was like and I've missed it.  Dad's had two good days in a row which, despite the fact that the third good day may not materialise, is apparently enough for me to relax for two minutes.  Just call me Pollyanna. 

I just really wanted to write that down.  Something positive, hopeful even, for once.  Oh don't get me wrong, my dad is still dying, I've made police complaints recently, my family is a mess, I'm woefully underprepared for impending parenthood, peeing about a dozen times a day, slugging apple cider vinegar as a homemade remedy for heartburn and thoroughly fucked off at my bank but I AM FEELING POSITIVE right here and right now.  Here are some things I can say are genuinely good:
  • My in-laws have helped immensely with painting my freshly re-constructed bedroom.  I love the paint colour we chose (Resene Half Athens Grey, should you care) and the room is lovely.  They've been so wonderful to us. 
  • I listened to the rain on the roof last night and thought fondly of all the extra insulation we installed in the new bedroom as well as the heated towel rail in the bathroom (still not over it.  It's like christmas every time I pick up a towel). 
  • I'm babysitting P's cousin's very cute baby this evening.
  • I had a moment of real excitement about Cletus' arrival in July the other day.  It's looking like I'm going to have a real live baby who is fathered by my favourite person and should be awesome in his or her own right. That's pretty great. 
  • My boss has been so understanding, patient and kind (as have my colleagues). 
  • My husband has been beyond.  I love him. 
  • I made people laugh at yoga the other night, rather than being the quiet sad sack in the corner prone to a wobbly chin.   
  • Tabby cat has been sleeping by my belly.  It's been lovely and soothing. 
  • I baked an excellent apple loaf that is basically butter and brown sugar and makes me fat and happy. 
  • I'm going to see my mum and dad this weekend.
I mean, that's all good stuff.  I'm sure I'll read back on this in a week or two and want to get stabby with a rusty spoon but for now, I need to focus on all of this.