While we wouldn't "10/10 recommend hospital to a friend", we would hate anyone to think that hospital is all doom and gloom, so we thought we'd put together a list of a few things that we actually enjoyed during Rory's BRHC stay. I also wanted to make it clear that we still have a sense of humour and it's absolutely OK to laugh with us. (And at us.)
1. NHS arts and crafts
We figured if Rory was going to be staring into sick bowls regularly, we may as well make it interesting for him. Similarly, we found extra uses for the blue gloves. I'd like to point out that a nurse suggested the glove idea, and we brought in our own permanent marker so as not to cost the NHS any more than Rory had already cost it...
2. Breast pumps
Have I mentioned the hospital-grade electric pump yet? It's awesome. Weird, but awesome. Rory had to use a nasogastric tube post-surgery and again during chemo, plus chemo was affecting his appetite so I had to express milk every now and again anyway. When he was admitted to PICU he was nil-by-mouth for most of it so the breast pump was my new best friend. It's also a bit of a bizarre commodity - if you manage to get hold of a hospital breast pump, don't let it out of your sight. I had to share one on Starlight Ward for a while with a ward downstairs, which isn't ideal when you realise at 5am that you can't actually stand up without leaking milk everywhere and expressing is almost an emergency. Two days later, the housekeeper marched in with another breast pump. I asked her where she'd got it, she said she'd trekked all the way up to St Michael's Hospital (a severe hill - look it up) to retrieve it. I'll do a proper breastfeeding-a-chemo-child blog post another time (I can almost hear the shivers of anticipation), but - in short - 84 bottles of milk made it to the milk bank thanks to the trusty breast pump.
3. Housekeepers
While we're on the subject - the ward housekeepers. They are the most formidable forces of nature keeping the non-medical side of the wards running. Ask them with a subtly balanced amount of charm and you can get all the sneaky toast and jam you want of a morning. Just at the moment that you feel like hiding in the nearest cupboard or banging your head against a wall, a housekeeper will open your door or pull back your curtain, tell you cheerfully how sunny it is outside and make you feel like - actually - you can tackle another day.
4. Wee-catching
As part of Rory's chemotherapy regime, there were various points in every cycle at which the nurses needed to test the pH of his urine in order to begin various drug infusions. Sounds simple enough, right? Wrong. Testing Rory's wee involved me or Matt (depending on who had drawn the short straw/had enough patience) sitting with a half-naked Rory on our lap, plenty of incontinence sheets between him and us, and a plastic pot poised tentatively underneath his penis. And then the wait would begin... Obviously this would be straightforward enough if Rory could have told us when he was ready to wee. If the wait had reached an hour, it was understandable that me or Matt's attention would have drifted, as would our hand holding the plastic pot. And it was, inevitably, the moment at which the pot was not under his penis that he would choose to wee...everywhere but the pot. And so begins the next hour of waiting... We did have a photo of this, but I think we'd all rather leave this one to everyone's imagination.
5. Insuflons
In order to speed up the recovery of his white blood cell count, Rory received injections of a drug called G-CSF. Because Matt and I were keen that we should be able to administer this drug ourselves (in theory at home, although I think we only made it home for one of these injections!) and so that we didn't have to stab Rory's thigh in multiple places over and over again, he had something called an insuflon - a kind of soft cannula that sits subcutaneously and only needs changing weekly. An insuflon (look up an image, if you will) has a kind of long straight bit which goes into the skin and two small, round pads either side of this to keep it in place underneath a dressing. His first insuflon had bled a tiny amount when it was inserted, and so when it came to be changed a week later, a thin layer of crusty blood had remained around the outline of where it had been. The nurse changing it held her breath, and as soon as Matt and I burst out laughing, so did she, relieved that we'd reacted as immaturely as she had wanted to... We kept the blood there for a bit, just to entertain the queue of nurses who were knocking on the door to have a good giggle.
6. Nurses
Again, while we're on the subject, nurses. Every single nurse that we encountered cheered us up and kept us smiling throughout Rory's entire hospital journey. They played and chatted with Rory, cuddled and entertained him in the wee hours on the odd occasion that Matt or I desperately needed some sleep and Rory was having none of it. Their sense of humour in the face of adversity genuinely kept us sane. They are phenomenal people.
7. Sphygmomanometer
I kid you not, there is such a thing as a sphygmomanometer. It's an old-school, manual way of measuring blood pressure, particularly on tiny ones who can't get on with the electronic BP machines. Go on, say it out loud - you know you want to... endless fun.
We don't have a photo of a sphyg, but here's me playing with a stethoscope at a low point. Rory's Speech and Language Therapist used a stethoscope to assess his breastfeeding before and after brain surgery and it became apparent to me and Matt that we could use it to listen to all sorts. I think I'm trying to gauge how hungry I am here...
8. Ward rounds
Have you read Adam Kay's This Is Going To Hurt? If not, off you go now and read it - it's great. And (from our limited experience) highly accurate. He's so right - ward rounds are weird... and hilarious. A LOT of people shuffle in in an awkward row, only some of whom you ever get introduced to, they make a little (or massive - if you're in HDU or PICU) "drama circle", all nod along thoughtfully at what a consultant surmises, a nurse (usually in the middle of 26 other things) gets put on the spot in a quick-fire quiz and then everyone shuffles out again. On Starlight, the oncology ward, the ward rounds are some time between 10am and 2pm. Everything works in a much, much slower time zone on oncology wards... On Bluebell and HDU, the ward rounds are early in the morning (bear in mind that Matt and I live with a theatre body clock...and not the hospital kind of theatre). Only twice did I wake up (from my cupboard bed - surprisingly comfortable!) to find a line of consultants and junior doctors already encircling a very much awake Matt and Rory, nodding seriously and clearly pretending there wasn't a snoring, dribbling mum in the corner still in her pyjamas.
Admittedly, we didn't find PICU ward rounds quite as amusing as the others, largely because they were very serious, generally bore bad news and we were very stressed and sad by this point. The only snigger-out-loud upside - and if you've read Adam Kay then "you'll know" - is that they genuinely use a laptop-on-wheels.
9. The Santa Chute
We moved rooms on Starlight Ward on Christmas Day so that the nurses could keep a more immediate eye on Rory. This didn't last long - we were only in there for about 2 hours before Rory was taken downstairs to PICU. Matt and I returned from PICU to grab some sleep in the new Starlight room at about 2am and we were just dozing off when we heard a crashing sound on the roof above us. We wondered if perhaps Father Christmas was a day late landing at Bristol Children's Hospital, had a good chuckle and tried to get back to sleep. But about half an hour later, there was another loud bump rolling across our ceiling. And then another. We drifted in and out of consciousness, perplexed by the crash-landings and on our way down to PICU the next morning, we managed to catch a nurse to ask about what the mysterious bumping on our ceiling was. She laughed and said, "Ohhh! You've never stayed in Room 9 have you?" We shook our heads. It turns out that Room 9 is directly underneath the pharmacy chute to one of the ward's drug rooms. Medicines and blood samples travel back and forth over the room 24/7. While there are certain PTSD-inducing beeps, alarms and sirens that still send shivers down our spines, the bumps of the Santa-landing chute are a familiar soundtrack that we almost miss. Almost...
(Side note: while our Christmas was unarguably shite, the NHS did make it as magical as they possibly could - especially for the children - and there were some genuinely lovely moments).
10. Time as a family
This one's super cheesy, but bear with me. From Saturday 19th October, the day of Rory's diagnosis, to the day that Rory died, Matt, Rory and I spent almost every hour of every day together. (Except the 48 hours when I got banished from the hospital with Norovirus.) We had every meal as a family, entertained guests as a family, spent as much time laughing as we did crying and had ALL the Rory cuddles ALL the time. So don't feel too sorry for us...😊
