Day 452: Complacent

I started writing this post on day 452 and now it is day 466. I even changed the title from Happy New Year to Complacent and it feels more fitting. It does give you an indication of just how things are around here at the moment. I start writing blog posts and then life gets in the way…

How’s Bilbo Doing?

It has been a while since i’ve updated on him. To be honest it has been a bit up and down. Up because we’ve got him back up on 100% doses of his chemo. He continues to take his daily, weekly and 12 weekly cycle of various chemos. And we also continue with his daily anti-sickness as part of our new normal.

Bilbo was excited to return to school after the Christmas holiday. He has been thriving his curiosity to learn is infectious and he has been coming out of school buzzing.

Both boys have started dancing and he’s keen to trial gymnastics and ninja. In fact we were all set for a gym trial but cancer had other ideas.

Complacent

I think we’ve been riding high on the back of the most amazing Christmas where cancer was not welcome. And we got complacent. Rich was snowboarding in Austria and to take the edge off a crazy work week i’d invited the school run mums round for wine and cheese night.

Sadly it was not to be…Bilbo had said he wasn’t feeling great after school, but seemed to perk up a bit after dinner. And just as the wine was starting to go down nicely and i’d spread some rather tasty crackers with some delicious cheese. I heard the familiar sound of Bilbo in pain.

He was complaining his head hurt and he was cold. Of course the thermometer told a different story, he was getting a fever. A quick call to ward 4 and they told me to make my way in.

We haven’t been into hospital overnight since July, i’m reminded that this makes us very very lucky. But I was also pissed off that cancer had picked today to make its return. I had absolutely no idea where anything was. Day hospital bag hasn’t been used in weeks and was full of less than useless bits and bobs and the overnight bag was actually tucked up in the loft.

I vaguely recall chucking various things into the bag and what I can tell you is most of it was useless but very very heavy.

Hospital

And when this has happened before Rich is normally with me and drops us close to the ward and parks the car. This time I was on my own. It is times like this I curse the fact we didn’t apply for a disabled blue badge. 99% of the time we don’t need it but times like this it would be extremely helpful!

I also value Rich’s ability to keep calm and keep me calm. As I drove to the hospital I could feel the familiar hot tears build up, I felt sick. You can’t help but think, what is it? Praying it is a bug, strep or anything but the start of something much worse.

Bilbo was a trooper he managed to walk from the carpark to the ward, but once we arrived he was exhausted and just wanted me to dim the lights and let him sleep. As cancer patients we’re always given an isolation room. Bilbo is so used to hospitals he’s happy to jump on the bed and go to sleep.

Unfortunately I started to get a knot in my stomach.

Cannulas

When Bilbo finished frontline treatment we agonised over whether to have his hickman line removed. My biggest concern was if we ended up in and out of hospitals with Bilbo’s compromised immunity. What would we do without the line?

When Bilbo was first diagnosed we didn’t get the line for about 10 days. We had to deal with cannulas and it was incredibly traumatic. I wrote about it here: Cancer We Hate You the clue is in the title, it was hell.

When Bilbo has a lumbar puncture every 12 weeks he goes to sleep with gas and they put the cannula in whilst he sleeps. He’s brave but it’s still challenging.

A temperature = risk, risk = IV antibiotics and all of that = cannula.

As I said above we’ve been lucky, he hasn’t been in and out. This was our first need for IV antibiotics since July, hence my inexcusable disorganisation. I’m sure we made the right call, not having a line means Bilbo can swim, bath, we can go on holiday, but I braced myself for what was to come.

Trauma

Bilbo is a pretty straightforward kid, I informed the doctor in the hall when you’re ready to do it, just get on with it. However three doctors, our consultant and a nurse later it was clear it wasn’t going to go to plan. I had to hold Bilbo down whilst talking calmly into his ear to be brave and stay calm. Bilbo screamed…”they’re trying to kill me” “they want to chop my arm off” “make it stop mummy”

We had the best cannula doctor on the ward, but when Bilbo is worked up and terrified it is irrelevant.

And i’m also left haunted by those first 48hrs of diagnosis. Our nurse was the same one who looked after Bilbo and prepared him to be blue lighted to Oxford.

I remember having to hear his cries as they put two cannulas in. And then repeated the process a week later after we were discharged from Oxford and they needed to do bloods and prepare him for his hickman line operation.

Scars

And that is the challenge with cancer, it scars you for life. Those moments of trauma never leave you they just hide under the surface ready to rear their ugly head when you least expect it.

Hospital stays are never fun. You are constantly paranoid, a temp with Harrison results in little more than a dose of calpol and some rest. But for Bilbo it can mean so much more.

And our worry of relapse or something more sinister will never leave. There is no doubt about it, we’ve become complacent, but have we really? Or are we just trying to live out our lives like a normal family? Don’t we deserve that?

Discharged

It turned out Bilbo had strep, his consultant was happy to reduce us from 6 hourly IV antibiotics to 24 hourly dose and then by Tuesday we moved to oral antibiotics.

Bilbo happily returned to school on the Monday with his cannual bandaged up.

Once he moved to oral antibiotics he was delighted to get the cannula out. And his first request…a bath!

Lesson Learned

And so I have since repacked the hospital bag.

Sorting through the clothes in the bag I am reminded just how much Bilbo has grown in the last 6 months…

And i’m thoughtful about how this applies to us as a family, we’ve grown in the last 6 months too, whilst we might have become complacent i’m ok with it. As it means we’re living…and life has returned back to our new normal.