I still remember the first air bubble I ever had in a line going into me. I’ve seen the hollywood movies – if you want to kill someone, you stab them in the neck with an empty syringe. Air in your blood kills you, right? I panicked when I saw it creeping towards my body on my first day of chemo, over 4 years ago.
‘Ummm… Nurse…. Are you trying to kill me?’
She’d laughed. Apparently it takes a LOT of air to kill you.
Since then, I’ve had many air bubbles in me. There was even a time when I was in the hospital and the nurse forgot to prime the line (i.e. remove all the air) before connecting me. I checked shortly after she hooked me up, and realised she’d set a whole line of air to push into me. I called her back and she primed it. It was around 3am.
But I’ve not died from it yet so that’s something.
At least the familiarity of it all this time means that minor panics like this can be avoided.
Today was day 4. I spent my 6 hours in the cancer centre getting my chemo like the good Jen I am, then got to escape back to the Cotton Rooms for an evening with my bestie. I’ve realised that I never really wrote a proper post about the Cotton Rooms the first time around, and I know there are probably some newer people here who had no idea what I was talking about when I mentioned staying in the Cotton Rooms again so it feels like as good a time as any to talk about them!
For people who need to be connected all through the night, but are otherwise relatively ok, we don’t have to stay on the ward in a hospital bed, we get to live next to the Cancer Centre at a 4* hotel run by UCLH (my hospital) called The Cotton Rooms. It allows me some respite from hospital life while I’m getting treated. It’s really lovely. We have two little twin beds and a lovely room with a bath (though the plug doesn’t work, which was a sad realisation for Rosa who had got her hopes up – I’m lucky that I’ve got a bath at home and regularly spend time in it).
They are really nice facilities, but they are run on the NHS so things are slightly falling apart. The key card on our door won’t work so we have to have a manual key but as they need to be able to have access to the room in case of a fire, we can only have one key. Thankfully Rosa is always diligently waiting for me to finish chemo each day so can let me in. I have images of her sitting in the room pining away, wailing ‘where’s Jen’ while I’m not there, like my fluffy cat used to in Canberra. But she is not a fluffy cat so she does some work and takes herself out to yoga but is back in time to let me in when I finish, which is the main thing. Pining is not a requirement (though I do hope there’s a small amount of it).
Each morning we have our breakfast, either in our room or in the dining room. They do a buffet cooked breakfast each morning. Though we didn’t realise until today that they were doing it, because I’d been told by the nurse in Ambulatory care that it was all done in the rooms now because of Covid. And the only options to order were continental breakfast, which we did the last two days. But last night we forgot to put the order in so we went to search out some food and realised the whole buffet was in fact ON.
Bang a gong. Get it on.
We then filled our plates with bacon, beans, sausages, hash browns and mushrooms and were very happy. Then Rosa walks me to the cancer centre (via Starbucks so I can get a LARGE Toffee Nut Latte to get me through the morning).
She’s not allowed to come in with me for chemo – we tried yesterday, but apparently we’re not allowed anyone in with us. Covid rules. So it’s just me and Clarence during the day. It makes no sense since she’s been Covid tested and is literally spending every night with me, but I get that it’s just a regulation – no extraneous people in the hospital (not that I think she’s extraneous)(now I’ve used the word extraneous so many times I’m wondering if it’s actually a word). She is, of course, very aneous to me, but I guess we’ve got to follow the rules
There’s also a beautiful little common room called the Cotton Cove where we can sit and do a bit of work or play board games, which is nice.
The nicest thing is the freedom it affords – Rosa and I went out for a lovely Italian Dinner last night. You’d hardly believe I was having chemo (except for the 3L of water attached to my arm). We had a lovely little outing. The other nights we’ve had microwave meals, provided by the Cotton Rooms but last night we decided to venture out. Rosa dressed like an Aperol Spritz so it was only fitting she ordered one. I was laying off the alcohol this time since I’ve got chemo that might affect my kidneys, but I’ll definitely be popping some champagne on my Birthday on Saturday, once I’m disconnected. I enjoyed living vicariously through her (I don’t actually like Aperol Spritz. Gasp!). I had a Fanta (also orange, very on brand), two in fact, and they were exactly what I needed.
I’m definitely starting to feel the chemo. I was feeling fine on day two, but since day three I’m starting to feel sluggish. I remember this feeling. I’ve also had some weird nerve twitchy things in my hands and I think my eyesight has got a bit fuzzy. I’ve meant to keep an eye out (ha-ha) to see if I’ve got encephalopathy (and it’s why I need to have someone staying with me). They told me to look out for ‘tiredness’ (I tried to point out that that is a side effect of chemo) and being confused or delusional. I don’t feel any more confused or delusional than I usually am, but thought it was worth mentioning that I’ve had a bit of an odd thing going on between my brains and my hands. They don’t seem to bothered though, since I can still use my hands so we’re just keeping a general eye on it to see what happens with it.
They originally said the chemo would go for 3-5 days, depending on how well I can tolerate it so at worse they’ll just knock it back a day. But for now, it’s tolerable. It’s all tolerable. And hopefully this chemo is getting in and knocking back the tumour too.
I don’t feel as rough as I have other times. But I’ve also got so good at ‘coping’, I’m unsure really how rubbish I feel most of the time. I’ve miraculously been getting decent sleep, the steroids don’t seem to be keeping me up, and although I feel pretty tired, I’m still able to write this, for example. So that’s cool. Though the weird twingy nerve thing keeps unleashing my hovering fingers on my keyboard and smashing in extra letters here and there. Extraneous letters.
But I’m coping. It’s tolerable. It’s not nice, but there are moments of beauty, as there always are, and I’m always there looking for them.
4 Comments Add yours
you are amazing, Jen, always looking for the moments of beauty, and finding them! Thank you so much for telling us a little more about The Cotton Rooms – the NHS has certainly come a long way since I lived in the UK (moved away in 1986), and it’s great they have hotel-like facilities for those who need to stay close by (but don’t need a hospital bed) and their close friends or family accompanying them. Sending positive vibes for the rest of the chemo!
I’m so glad you have the support despite the lack of plug in the bathtub. Sending love and good energy your way x
‘Bang a gong. Get it on.’ 😆😆 pure poetry!
Hi Jen, thanks for the lovely photos, (including one older one),of you both. it is really great that you both are able to have fun together this time.
Happy Birthday for tomorrow, and we all look forward to the next one.
Lots of love to you both, John.