Dying, in 120 tweets.

Partly for me, as part of this grieving for C, and partly for other people, so they could, if they so wish, see what this was, I decided to list my tweets about C one after the other. There were, in the end, 269 tweets about her illness, and dying. I have edited them down to 120, and added, as well, a bit more of what was going on. Because there was so much I didn’t tell, didn’t share with all of you. Some of that, in the last week of her life, was because I started to blog it. Some of that was because there are things that don’t make for particularly good reading. And in the end, it’s a record for me.

July 3

C has an enlarged uterus – gyno on Monday.

She rang me. We hadn’t talked for a couple of weeks. I prattled on about myself, and then she said, I have some news of my own. I felt it then. She joked about hysterectomies. But we knew, all of us, that this was bad. She’d been having neck manipulation to see to the pain in her abdomen, had looked at herbal remedies. How were we to know? And what good would it have done, anyway? I saw her on the Thursday, and alarmed at her pain, pleaded with her to go to hospital. It wasn’t until the next day, when her good friend Marge saw her, and demanded she go, that she actually went.

July 7

Went to see C in hospital today. No good. She was fast asleep, looked so ill, and in so much pain. I cried.

I left a note to tell her I loved her. Seeing her face, so twisted in pain, even in sleep, horrified me. 

She’s having exploratory surgery tomorrow, and my mind has gone to the worse place possible. I almost lost her once, it’s too soon.

The worst thing is she’s so little – seeing her asleep like that, tiny in that hospital bed, so so vulnerable.

July 8

C had surgery today, results come back in 10-14 days. Apparently no surprises, have no idea what that means.

–    what it meant was that they found what THEY expected to find, rampant cancer, everywhere

C feeling much better, pain meds under control, coming home tomorrow #andnowwewait

but she didn’t

July 9

Rang C “I’ll come tonight!” “That’ll be…..nice”. “You don’t want company do you?” “No”. Ancient friendships means honesty.

what it meant was that she didn’t want anyone to see her like that. 

July 10

So C has cancer. Either cervical or uterine. Not sure which yet, not sure how advanced.

 they knew exactly what it was, just not where it had started.

More testing to come, and then meeting of surgical team etc next Weds to confirm diagnosis, and route of treatment.

but there was no route of treatment, only “I’m so sorry” “you have months, not years” and even that was optimistic. She had 43 days left. Time became so important. We talked about it all the time, H and I. And then C and I. 

And I possibly need you even more in the next few days than my old friends, who I cannot tell, until we know what we’re dealing with.

 I cannot begin to express how very important you all have been, no more than in that period of time, when no-one knew.

July 11

Went in, leant over C, told her had lots of kisses for her, gave her one, sat down. “That’s only 1” she said in a miffed tone.

we went on in this vein for the next 42 days. Kisses were important for greeting, and for goodbyes. They were our language of love. 

12 July

I have a terrible feeling about C’s cancer. But. Seeing her was all I needed. Moment by moment, hour by hour, I cherish her.

  I knew. With every fibre of my being. I knew.

Poor G. Rang him to see how C was. Staying in hospital till Mon, CT scan. Bad pain day today. He broke down in tears and hung up.

he knew too

On a positive note: packing bag for seaside stay with S and B  – much excitement, and what a blessed reprieve from reality.

   that weekend was the calm before the storm. How lucky to have had that. Eating outrageously well, talking till the cows came home, getting slightly drunk. 

13 July

1 of the worst things, for me, and this is v selfish, is keeping my beloved friends on a need-to-know basis abt C, right now.

There’s only 3 of us who know what’s going on, and I find that very difficult. Next week, when we know what’s going on, it will be better.

I kept so many people away from her for so long. It was unbearable, really. So many people loved her, and yet none of them knew she was even ill. 

15 July

Been with C a couple of hours. Seen pain specialists and respiratory specialists, b/c has developed lge clots on each lung.

A has plaited her hair, G has fed her. She’s awake and alert so it’s all doable.

Seriousness of clots in lungs just sinking in now, after nurse said “It’ll be a tough few days”. Just got it.

 ridiculously, the lung clots were the least of our worries. The bloodclots that they feared would kill her had not a chance to do their worse. The cancer shut her down so quickly. 

I am weary. So weary.

and I still am

16 July

Ah shit. And so the wounded and weary gather together to process what’s happening to one of our own, and what it could mean for us.

we had no idea, no idea at all – she had just 37 days

17 July

Today’s the day. Which would be like any other day, because C’s ill and no diagnosis is going to change that. But still, anxious.

I have no idea why, but I thought it would be better to leave Graham and Carol to it. He rang me panicked, said she had been asking for me. I was way out of the City, at a remote and wonderful beach with a dear friend and our dogs. We went back to her place and I texted him to ask if there had been news. He didn’t answer so I texted back to see if he wanted me to be there. He rang. “Yes, please”. And I raced away from there, all my adrenaline released, all my fears and imaginings coming true.

My best friend C has been diagnosed with end stage metastasised endometrial cancer. Gutted. Numb.

The oncologist was lovely. She delivered her news with gravitas, and great compassion. “I’m so sorry” she said. I asked G, who was in floods of tears, and unable to speak, if he wanted me to ask The Question. He simply nodded his head. And I asked. How very wrong the answer was to that question we would come to find out.

The Question was: how long do we have? she had just 5 weeks and one day to live.

18 July

C stable-ish. Still very confused. Got angry abt catheter being put in, accused G of joining a cult #ThatsMyGirl

I was also accused of kidnapping her. This accusation was made against me a couple of other times, in delerium. She knew how protective I had always been of her, and how much I had wanted to take her away from G in those very early days of their relationship. How very often I had wanted to keep her for myself. She knew that me kidnapping her was not an unreasonable thing to expect. 

19 July

Status update from G: still befuddled but major rage last night wanting to go home. Mild sedative given.

Trying to get her through the next few days/week, then they will look at chemo. If she’s suitable for that, 25% chance of it working enough to shrink the tumour, if it does that we have a year at the very best. Lots of IFS at the moment.

the rapidity of this cancer, the way it engulfed her, surprised everyone, no-one more so than the medical staff

 

Waiting to skype with H. Remarkable technology that allows 2 friends in different parts of the wld to boohoo at each other.

An hour of skype an ocean of tears raised heart at friend’s return so we can deal to this shit

she was in Borneo, a world away, had rung G every day for updates, was worried, but stuck for the moment. Never one for tears, she was ashen as I talked to her. We cried  and I said to her, just come home now. I need you. 

Today with C: foot massages, laughter (at me) and instructions to make a phone list. (I don’t know what phone list but it’s VERY IMPT)

–       she was very determined that no-one know until we had all the information – even when we had all the information, she was reluctant. I guess other people knowing made it real for her

20 July

Shit just keeps getting realer. L was so shaken by seeing C she told her she loved her. L never says “I love you”. Ever.

 L was so shaken that she didn’t visit C again, and after C died, and I let her know, she texted back “I’m so sorry”. She just couldn’t do it.  I try hard not to judge her for that, but I think a little part of me will never forgive her.

The thing abt oncology ward is that people are settled. Few casual visitors, e/one knows where they’re going. Lots of smiling + laughing.

Alone with C, sleeping peacefully after a huge day of visitors.  Cl had an especially lucid day today. “What level is your pain?” “I don’t care. Just give me the painkillers.” That’s my girl.

we searched always for her in her delerium – sometimes it was hard to spot what was her, and what was her fevered brain, but she was always there

21 July

Today, H and I went through C’s old brown address book, where everyone has at least 2 numbers. It’s puzzling, that old thing.

Phonecalls to tell of terminal cancer. # made: 5. Responses varying from sobbing (3) to pragmatic (2). So that’s those done.

I was very blunt and clear on all phonecalls except on one of the sobby ones. We sobbed together.

She was appalled when she found out what we had done. And at some of the people I  had rung. “But I haven’t seen them for years!” She never really truly understood how very important she was to people.

Startling realisation: when they said they didn’t know whether it was uterine or cervical they meant they didn’t know which was the primary.

and finally it clicked

22 July

When you think about how much time you get off work, paid, when someone you love dies, it’s not enough, is it?

And you want to spend as many waking hours as possible with them, to imprint their face and being on your mind, you get no time at all

So I did this…….

 

Watching C sleep. Just because.

Today C and I had the conversation abt whether she wanted ppl staying the night with her. The answer was, apart from G, no.

She didn’t want her friends to do any of the “yukky” bits. That’s not what friends are for, she told me. I argued that, in fact, that’s exactly what we were for. But she wouldn’t have it. And in the end, of the last 50 nights of her life, G spent just four away from her. 

23 July

Completely seriously, last week, C thought she was pregnant and in St Mary’s Hospital. Only now does this make sense. #toomanytrashymags

she was mortified later on, and we talked about it, then laughed. Very hard.

Radiation therapy making C v sick and v tired now. Pulling back on being the devoted bedside attendee for a bit. I remember this bit.

I miss doing the duckie cuddle with C. Duckie cuddles are awesome – you hug and then waggle your bums. I don’t do it with anyone else.

24 July

C ok for H and I to go up today. Must confess yesterday’s day off did me the world of good.

Old school friend getting v tetchy about not being allowed to see C. I want to slap her.

there were a number of people who wanted to see C, and in fact, this woman, and her sister, did go and see her and offer to stay the night with her when she came home – C thought very seriously about that. They weren’t close friends, and so I think she felt okay with them seeing the yucky bits. That, and the fact that they were both nurses helped greatly. 

25 July

Good time spent with C. Lots of laughing, we three friends. Felt normal (ish)

27 July

Up with C- the word dying has been used for the first time. Also the question has been asked. Why isn’t there a hospice on Waiheke?

 in the end, it didn’t matter where the hospice was – she was only fully conscious for her first day at hospice, and looked out the window just once. She was more focused on the cat print on the wall at the end of her bed.

Lovely afternoon with C and H. Not sorting photos except our own – C wants to be there when we sort through hers.

  and as it turned out, we needn’t have worried. She gave us only 6 old photos of her as a child. The rest H and I gathered from our own collections, and from G’s iPad after she died.                                                                                      

Interesting shift in C – talk of hospices, and not knowing how long she has, and not going back to work. V determined.

She never, I don’t think, came to full grips with dying. How could you in such a short period of time? She would get briefly furious about it, and then subside into acceptance. 

H is adding photos to my Dropbox. And I am crying. God, we’ve had some fun times.

they carry me through. Such laughter, and talk, and eating, and loving, we did. Thirty three years of gloriousness, and nary an argument, nor cross word.  Except in her final days of consciousness, when I tried to choke her, but that’s another story.

29 July

Bugger. Bugger bugger bugger. C not allowed home till this weekend, and then only for the w/end to see how she goes.

After talking with C tonight, it hit me. This cld be a relatively long road we’re on or a fairly short one. Either way, let’s not rush.

but it was, it was a rush, the whole bloody thing, a rush that only stopped when I was with her.

30 July

G called cellphone at 10.40. Panicked + rang back. No answer. Rang again 4 mins later. Sounded cheery. No panic #bestillmybeatingheart

the telephone was carried around with me at all times, I grew to hate it’s ring

Today’s life lesson from C: we’re playing e/thing by ear. Day trips home in the w/end only due to bedding situation at hospital.

we still really thought she was going to come home for a good long period of time. 

31 July

CT scan for C’s brain. Worried abt memory loss. Results tomorrow. Begs the question: why can they not give you the results immediately?

1 August

Call from H. Brain scan clear. Palliative social workers came to see her, explained e/thing again. She kept asking “is it terminal?”

Palliative social worker also talked to C abt how this is the best she may ever feel again. H said that was confronting.

And it was. It really really was the best she would ever feel. 

It’s all confronting. Every bit of it’s confronting.

I want you to know, in the midst of this grief, this sense of enormous loss I feel, the fact that some of you met C cheers me so much.

and cheers me still. How lovely that day was. What a shining memory.

2 August

Spoke to C on the phone. “I miss you” I said. “I miss you too” she said. “When are you coming?” That’d be tonight then.

Talking to the elderly mother of an old friend about C. “It would be quite sensible if it was someone my age. But 49!” Indeed.

Got told off for leaving C for a couple of days. “I told you to rest for a day. I don’t remember saying you could rest for 3 days!”

Beautiful visit though. Just we two. Talking about her death, and G. And pain. And hospice. And everything in between.

It’s shit, I told her. It is a bit, she agreed. Are you angry, I asked. I feel okay about it, as long as there’s no pain.

and there wasn’t, in her final two days – finally, they got it right.

The bad news: cancer is spreading. Discovered tumour in neck this morning. I really don’t think we have long. “A year wld be nice” she said.

We had just another 19 days.

4 August

3 1/2 hrs of best friends talking: funerals; caskets; pain relief; photo sorting for funeral montage. And laughter.

C joked abt crossing legs, and letting blood clots kill her. We vetoed this idea. Writing her a list of ways she’s not allowed to die.

And can I just say: we had a duckie cuddle. And it was brilliant.

So this is the plan (tentatively): to go to C’s every day after work, take Ruby w/me (she can stay in car) so that I can walk her after

this lasted all of 1 day – there was never enough time to fit it all in, and poor Ruby got the bum end of the deal, but oh those nights with C were precious

I find it somewhat ironic that when not with C  I’m all messy and tears-y. But not when I’m with her. Good work, brain.

5 August

Head lesions are not what I thought they were. They’re baby tumours. I had never even heard of them, and now I wish I hadn’t.

Conversation with H: mutual consent on 2 things. We neither of us think Carol has long now. And we are loving our time together.

we were right, we had just 17 days left with her, and now we will need to think about where we fit into each others’ lives

I told C tonight that I was sharing this with you all – your lovely twitter friends, she called you

and she was very fond of those she had met – always asked after you and wanted to know what you were up to, tweethearts she named you

What I’m asking is: how many of you would I be able to take to C’s  funeral as support? What wld be acceptable?

–       in the end, five friends from twitter came to her funeral to support me, and it was beautiful

6 August

Lovely time with C on her bed at home.

Tonight’s topics of discussion: enemas, and how they cld open you up for good sex; and, more seriously, cld her cancer have been detected.

Also discussed was other peoples’ self absorption: “your job now you’re dying is to comfort ppl, it’s in the job description” I said.

8 August

Pizza with H and C. H staying the night with her since G is away, and her pain is worse at night. Night off for me tomorrow.

the nights got worse for her, the pain less under control, and in the end, it was too much for G to handle it all at home

9 August

And so we have it. The Word from the Palliative nurse, who when asked what C’s dying wld look like, described what’s happening now.

H and I think maybe 4 weeks. It’s such a short time. Knocked me a bit sideways.

we had just 13 days left with her

11 August

On the upside, C is having an lunch party for a select few who incl her hated ex husband. Clever girl.

I asked her later whether it had been deliberate, this buffering of herself with friends. She smiled and said, maybe. Clever girl. 

Penis P made a dick of himself, cried all over C, stormed out. I was left to go after him. Told him to get it together. And he did.

Poss saddest thing abt today is that A and G are going o/seas in 3 wks, won’t be back for 6. G told them to visit before they go

and they did, both in hospital and in hospice, and I am so glad

12 August

I have nothing pithy that C said to relay to you. She is tired, and getting tireder. More pain, more drugs, more tired.

And so now the joyous task of emailing friends and asking for photos they may have of C. For her funeral montage, you understand.

13 August

So another bad night for C. And calcium is up again. Readmittance to hospital on cards. Poos.

C in hospital awaiting assessment in acute oncology. <sigh>

H rang from Australia for C update. I dramatically sobbed ‘what are we going to do without her’. Honestly, death is like a bad soap opera.

This was her last admittance to hospital, and she never came home.

14 August

We watched Shortie St, she kept falling asleep and we talked. Abt the holiday they had to cancel and how they might go next year.

I looked at her, she looked at me, and she said ‘oh alright I’m just being optimistic’

She says she doesn’t want chemo and what’s the use anyway. So she wants to talk to Ian. Different ends, I said.

She wonders why they can’t tell her how long she has, then later H rang and told me that she’s been told she has a couple of mths at best

  it was 8 days we had left with her

 

I like that you’re happy when you’re with me, she said. Why wouldn’t I be? I asked. All this, she said, and swept her hands down her body

And the best bit was that she walked me down the corridor, to say goodbye, gave me a big hug and said ‘I love you’

 

15 August

Very tearful morning. Spent most of it sobbing in office. Lucky there’s only 14 kids here today.

C recieved an interesting gift tonight. Four of those handblown glass pipettes that you fill with water, and stick in pot plants.

G thought it a suitable dying present, I thought his laughter tasteless. Then they made fun of my dirty house, so they can get fucked.

If I may mix metaphors, the shits about to get real so the wagons are in a circle. Or something.

I really should come with a warning sign these days. Warning! Tears! Hug at your peril!

17 August

Talk of funerals. We like The Cav as an idea.

we went with Purewa Cemetary in the end, G and I. It seemed more expedient. This was also the day that was the last of her best days. Her descent after this was hurried and cruel, her disappearance back into delerium just horrific. 

18 August

And so. It begins.

there was a phonecall from G. Her calcium levels had started to rise again, and they couldn’t do anymore to prevent it. Bloodthinners were no longer being given to her, in an effort to make her exit quick and painless. This was it. This was the turning point. 

19 August

C going to hospice at 2. So that’ll be a change of scenery, at least.

What I hate most about this part: having to figure out exactly when her last 2 days are so that I can organise a reliever.

the horror of having to work out what day she was going to die, that’s what gets me. How can anyone do that? And yet I did. And I was right. I knew she would die on Thursday, and as ever, she kindly obliged. But oh those last three days at work were cruel, and so pointless. 

20 August

Death’s a bit of a rough bastard, eh?

–       she sat up, with A and I, and yelled at us to give her pain relief. It was delerium, but also, she was so terribly frightened about dying. And the only thing that relaxed her was G’s voice. By that stage, she didn’t know who we were anymore, and didn’t care, she only heard his voice.

I want you to know this – this thing I do for C, sitting vigil for her, I would do for many of you.

And I would. You know who you are.

There’s a cellphone on my bedside table. I’m willing not to ring before the morning.

21 August

Since I won’t be around so much for a couple of days, advice pls. For this transitioning period, any special words of wisdom?

 in the end, there was no wisdom, except some words from a twitter friend who told me of her mother’s dying, and what that had looked like. That sustained me, that next dying day. For that day, was the day she slipped into unconsciousness, with the help of pain medication and high doses of antipsychotic to act as sedatives. 

And so another day comes to a close. C is now working to breathe. We have largely arranged her funeral, and all is set for her death.

Neither H nor I will be staying night @ Hospice – Graham claims that right, happy for her to die without us if that’s how it goes.

but we were there, she waited for us all, every one of we three to be there

I reflect on the heartbreaking speed of all of this. The wanton way in which the cancer has claimed her for itself. And the world turns.

Mostly I am relieved that I can be there now, like I have wanted for so long. It’s all I’ve wanted from the beginning.

22 August 29, 2013

It’d be a beautiful day to die, today.

Today was a beautiful day to die. At 6.15 pm, my most beloved C died peacefully with us all there.

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s