Wednesday, 30 April 2014

Week 14 Diary Luke Aemia

Sun 27th - Mon 28th April

Nothing much happened. Jacinta had a bit of trouble sleeping, quite unsettled so spent both nights in with me, feeding every hour or so, which was a bit exhausting. Teeth do seem to be on the horizon. 

Tues 29th-Wed 30th April

So, in a flash, admission day had come around.
We said goodbye to my eldest and middlest, at school and kinder drop-off respectively. Then we headed in to the hospital for our 10:10am appointment. We managed to find a park, probably one of the last 20 or so. Had we been 10 minutes later I think we would have struggled to get one. 

We headed straight up to Day Oncology for our appointment with the Oncology Consultant. She was running pretty late. We didn't get in with her until at least 11.00. Quick visit there, a double-check that we could have most non-chemo things orally to avoid any stopping of the chemo, and then to get blood taken before we started. She couldn't sign off on the order for chemo without bloods from that day. Had I realised I'd have done them first! She also asked me again to chat to another family who had a little baby starting our chemo protocol for AML, because Jacinta had done so well. She commented that Jacinta's kind of the poster girl for this protocol. She was really impressed at how well Jacinta's been throughout the treatment. 

So we got the bloods taken and a dressing change etc then went off to eat before we were hooked up. The bloods took a while to process so it was about 1.30 when they finally came through with the packs and got us hooked up. This means we won't be making it to the start of the wedding reception on Saturday, but we're still going for making it for some of it!

We hung out in Day Oncology, chatting with friends we'd made in earlier stays on the ward. It's one of the silver linings to being in the cancer ward, that you make so many friends that you're never short of someone to talk to whether you're on the ward or in Day Oncology. Remembering their names is another story, but you can usually remember their diagnoses & prognoses! 

The nurse came in to revise an earlier estimate that we'd be on Kookaburra ward around 3pm. We wouldn't. It'd be later. It occurred to me upon writing this that there would be some people who'd demand to know when they'd be in their room and why it was taking so long. Almost in the same thought though, I realised that it wouldn't be any of the parents who've been on the ward. One thing you get used to, if you aren't already, is that you just can't plan. As soon as one thing is a dead certainty, it's almost sure to change. It's not always for the worse that the unexpected happens, but it just means that you can't plan. There's never a 100% chance. Mind you, there never actually is anyway....

One by one people left and the nurse showed us a separate room with a cot that I could put Jacinta down in and not have to hold her all the time. Things got pretty quiet, Ben and Holly's Magic Kingdom came and went from the TV and I took to walking around outside our room again, gently jogging their memory that we were still there, in case our being tucked away in a different room had made us slip their minds. Around 6pm the nurse came in and said that by the time they were ready to go home at 6.30 someone from Kookaburra would be around to collect us.  I queried dinner and we got some snack boxes out of the fridge. Loaded with gluten and dairy, as so many of the things in hospital are, I managed to get some ham into Jacinta. (Salt - oh well.)

We had managed to eat a bit when the nurse came to collect us. Its nice that we know all the nurses now. Every time someone comes on at a change of shift or collects us from somewhere, it's a little blast-from-the-past moment. I think they still get excited when they get to look after Jacinta. 

So we're over the hurdle now of coming back in to where we don't want to be. Now we just have to sit out the chemo. The strange thing is that this could possibly be our last admission. If Jacinta does what she did last time, she won't hit 0 neutrophils or anywhere near it, and she won't need to stay in hospital. So we've said goodbye to a couple of people and there's a chance we might not stay with them in hospital ever strange. Of course, you can't plan, so there's as much a chance of that as there is of my being struck by lightning or of our car turning into an orange. 

Today we just did the being on chemo thing. Stuck to the pole. Still, it was Wednesday so there was my middlest and she had kinder and there was music group and we had a lovely visitor so the day flew. 

Early to bed was good so I'm hoping to get a little sleep before the waking begins....

Thurs 1st - Sat 3rd May

Well, not much happened for the next few days. The chemo kept going, for 96 hours straight. We had a shared room which was good for Wed since there was another small child there and we could share the play mat in the space between the rooms, but they went home that afternoon and we got a new roommate.

Once you've shared a bit, your requirements for a good neighbour become few.
a) No music playing all night on their side of the curtain.
b) No loud visitors at 7.30pm
c) No big groups of people laughing and joking like you're not sitting right on the other side of the curtain...
d) Keeping the telly to a reasonable volume so you can feasibly sleep on the other side of the room if need be.

The thing with these shared rooms is that they are in reality one space divided down the middle by a curtain on your side and a curtain on their side. There's a small no-man's land between which leads to the shared bathroom. It's deceptive. It appears as though you're in your own room with a door to the bathroom. You're not. You can hear every single thing that goes on across the curtain. You can hear them talking about you. You can hear their discussions about the footy. You can hear them talking about their diagnosis - again. You can hear them recount the story of their visit to the sperm bank - again. You can even hear them talking about how the nurses love them and how they have everyone wrapped around their little finger.....if only the nurses knew, wouldn't they have something to say!

All in all, our neighbours for the last few days were pretty good. I could tell they were trying to be quiet. I did hear the patient saying he thought they were noisier than us at one point, when a nurse or doctor was asking how he was going in the room, which was reassuring. It was fascinating to talk to his mum in the tea room, hear how he had all the nurses in stitches half the time and how bright he was and how well he was taking it all. Then I'd hear him telling his visitors himself about how his heart scan had shown up that it was made of gold - and how the nurses had all loved that and talked about it for days.

He seemed to think he was the most popular patient on the ward. Oh yes? Really?
(You clearly haven't been around long, young man....)

It was most fascinating of all when I would pass his room and he would look right through me like I wasn't there. He was chatty and upbeat with his visitors, and he could hear me, and I could hear him. There were no secrets. He had told someone that I got along well with his mum at one point so I know he knew I was up for a chat. Still, the few times I went past, it was a surly sour look on his face. Not a smile, not a wave, not a "hi". Nothing.

I imagine that was testament to how hard he was actually working to take care of everyone around him. Nothing in reserve. He did actually comment to one visitor that they wanted to move him to be in a room with another teenager so they could socialise a bit, but he preferred to be with us. He didn't want to be socialising with anyone. Just diagnosed, I can understand. When you're doing Year 12, working nights, playing basketball and you suddenly get hit with leukaemia, how the hell do you process that? (I really did hear everything on the other side of the curtain!)

So anyway, we were entertained by our neighbours for the last few days, and counting down the days til the wedding. The UK wedding party for Australia happened on the Saturday and we were hoping to get out as fast as possible to make it for as much as poss. They rushed it as much as they could, but we didn't get off the pump til about 4pm which got us out of there close to 5pm and to the farm by 6pm. We made it for the company, if not the actual event. Better than the last one!

So that discharge was touted as the final scheduled discharge, which is very exciting. I guess we'll see how things go.

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