Tuesday, 28 October 2014

Now what?

So we waited out the wait.

We had a bit of another snotty virus.

We had a death in the family and my husband had uni exams....

We had gastro.

I got around to ringing the nurse co-ordinator because I recalled that our Dr had said we could have the Hickman out the day of our appointment if the results were ok. We should just come fasting and be added to the list. The trouble here was that our appointment was at midday. I had no intention of arriving at midday with a grumpy, fasting Jacinta.

So I spoke to her and she said that it wouldn't work to just be added to the list, that the Thursday list was pretty full, but that if we didn't mind we could do it on Friday's list after we see our Dr on the Thurs. She said that the results looked fine to her, but she couldn't confirm fully that they were until the Dr did. That was enough for me to know that things were going ahead. (As it is, even if the doctor confirms something it can still go awry, we have found.)

So we went with that plan. It was a good plan. We confirmed it when we were in on Thurs. All was ok. The suggestion to remove the Hickman in Day Oncology with a bit of the hypnotic kept coming up when it was mentioned to a new person. I reiterated that it wasn't an option for us. We kept going back to the theatre list option.

Then that evening I got a call from our co-ordinator. This phone call was meant to be the one telling us to come in the next morning, fasting, to Reception J...but it wasn't.

It was telling us that there were two new diagnoses that needed bone marrow aspirates and they were the priority on the list. (Which, of course, they were.) The Friday list was looking full but the Monday list would probably be ok. The other option was they could do it in Day Oncology with some sucrose, as they sometimes do with little babies.

At this I had to ask, how painful was it, exactly?

The nurse co-ordinator said it wasn't so much painful as uncomfortable, and that it was more about keeping them still so they could hold the neck to stop the internal bleeding, than pain relief.
She said I could have a think which I wanted to do and leave her a message overnight.

I ummed and aaahed.  I really didn't want to get this wrong. I wanted to do it in theatre, but if it could be bumped to Monday, that could be bumped to Tuesday, etc, etc, and if we got a temp again we could be in hospital again for another week.

I was unsure about doing it in Day Oncology wide awake, only because I wasn't sure of how uncomfortable it was. I decided to google youtube videos of people having them removed. I found two without much trouble. What a resource the internet is!

Neither of the patients seemed too worried by the removal. No-one cried out or seemed in pain at all.
This formed my decision to do it in Day Oncology.  It seems I should not have let Jacinta watch the videos. She watched the second one and really flinched and cried when she saw them rip out the line. She didn't settle right that night and woke every hour or so.

We came in on Friday for the removal. She was fine, right up until they were about to pull it, when she let me have what for in no uncertain terms. She didn't want to do it, but we were right there and it was an exposed line into her jugular vein. So we pulled it. She was fine again, it seemed, a few minutes later. She wasn't really speaking to me for the rest of the day though.

Since then she's been flat, lethargic, spending a lot of her day either on her tummy on the floor or breastfeeding. It's a bit like she's gone straight back to just before her diagnosis. The gastro seems to be lingering.

We went to see Maria today for the first time in many months. We addressed the gut mainly to try and get her over this thing. It seemed to be both viral and bacterial so perhaps that's the problem with it taking so long.

Earlier last week my husband was asking about the bone marrow result. I had heard from the nurse co-ordinator that it all looked ok to her. This as much as confirmed for me that it was not growing back. My husband asked if this was a confirmed 'all clear'. I couldn't really say 'yes' because there never really is an 'all clear' for this. You just hope it never comes  back, and you worry less and less with each good result over time. That never means it's never coming back. It never means you can look at a bruise and feel completely certain it's nothing but a bump you didn't see happen. It never means you can see a rash or petechiae without a little voice inside your head reminding you that's what she had when she was diagnosed.

So I said it wouldn't be confirmed until the specialist said it was a good result. On Thursday the specialist said it was all good and we could get the line out. There was no big announcement,  no pause for effect. No jumping up and hugging everyone, tears of relief etc. It was just "that was all fine, so we can take the line out if you want".  And we'll see you again in a month.

He was all keen to get that confirmation so he could shout it to the world that it was all over.
Except it wasn't really all over. There was still the line to come out, or we could still be landed in hospital for a week at no notice. There was still the current sickness to get over. There will still be appointments in Day Oncology for months yet and years after that. So when the blood result was announced on his facebook page, I was right in the middle of deciding what sort of horrible day to inflict on Jacinta to get her line out, and it just didn't feel like it was the time to celebrate, to me. That's the fascinating thing about different perspectives.

The treatment has finished. The line is out.  These are my milestones. These are tangible differences to our lifestyle and to Jacinta's quality of life. The blood result, while it determines the future course, actually has less to do with life as we know it in that sense.
Unless Jacinta is the picture of health then I can't relax, regardless of what the blood tests say.
As her mother I have to observe every tiny thing. I don't have to factor them all in, but I observe them all and they all go in the mental file. Any time I see a few that belong in the 'something's wrong' pile, I'll be wondering. (And there's a facebook group for that, thank goodness!)

When does it all stop? A friend of mine says to give it 6 months....

So now we're not in hospital all the time, the job is to get Jacinta back to a state of good health, get myself back to a state of good health (I saw Maria too for my own exhaustion, the byproduct of 9 months' intense familial wrongness with no break) and start working on the things we'll need to catch up on if she's to start kinder in 2017.   No rest for the wicked!

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