A Timeline:
07:00hrs – I wake up, once again, I have been waking up on and off for a few hours. At 07:00hrs, my bladder told me that I could not lie in bed anymore.
07.05hrs – I returned to my bed and took my morning dose of medication including the one that sounds like a mountain retreat. I then dilly dally.
07.30hrs – Despite my hairdresser’s recommendation to wash my hair every four days, I decide that a wash is completely necessary and I sneak into the shower before Housemate emerges from his room, so I cannot be told off for making him late for work. I’m sure you can work out what happens next, but for the sake of accuracy, I put on the first of my day’s outfits once I get out of the shower.
08.10hrs – This is an approximation, but Housemate leaves for work. In the time before his departure, I change my outfit once and ask for his expert opinion. He does not offer an expert opinion, so I change out of the extravagant kimono and put a black shirt on over my jeans and body. I thought subtle and comfortable was probably for the best.
08.25hrs – Ocado arrive and I spend the next 15 minutes struggling to get my goods in to the fridge. Said fridge looks magical when I am done, I almost feel like a grown up.
08.40hrs – I cook my porridge. I then eat my porridge. At this point, I think I have plenty of time and I am convinced I am going to leave as planned at 09.15hrs, to ensure I arrive at the hospital by 10.00hrs. I then decide to watch an episode of TOWIE. Forgive me for that.
09.15hrs – I am not ready to leave on time, but I have managed to locate a cardigan that has been missing for two days.
09.30hrs – I book my Uber, but somehow find the time to take a photo of Bruce.
09.46hrs – I find the time en route to share this wholly necessary piece of information.
09.55hrs – I arrive at the hospital, make my way up to the 7th floor and check in.
10.10hrs – A Medically Trained Person comes to collect me, takes me through to Bay 5 and shows me to my bed to the day. On my arrival, I unpack my bag. I plug in both my chargers, unpack my laptop, kindle and iPad, find a spot for EMan and hang up my cardigan and handbag. I also pull a chair over to create an extra table. I did all of this completely obvious to the fact that the nurse was waiting to do my observations. Despite knowing that I had hours to make myself comfortable, I just wanted to make myself at home right away. I needed order. I didn’t just want to make myself at home by the way…
The first of several obs were then taken. Do not worry, I am not going to share with you every time my obs were taken. That’s mainly because I did not keep track of how many times my obs were done. Just know that they were done on the hour, and then before and after each infusion or change in speed of said infusion. That is a lot of times for somebody to take my temperature, pulse, blood pressure and oxygen.
10.45hrs – In goes the cannula. My concerted attempt to drink as much liquid as possible all morning, proved worthwhile. The cannula went in on the second attempt on the top of my right hand. Don’t worry, I did not take a photograph of this. I know some people can be squeamish around needles; thankfully, I am not one of them.
11.23hrs – The pre drugs start.
They consisted of one bag of Piriton followed by a flush, then an 8mg bag of Dexamethosone followed by a flush. Sometime after that, I then get a 12mg bag of Dexamthosone on the instruction from the pharmacy. Once again, this is followed by a flush.
This all takes some time and delays the start of the main attraction.
12.43hrs – It starts!
Look at the size of that bag! To begin with, due to the possible side effects, the Daratumumab is given to me very slowly. It speeds up gradually throughout the day, but not for the first two hours.
13.30hrs – Lunch has arrived and I start to feel nauseous. I am also dizzy. I’m trying to fight it, but aware of the warnings that I should report any changes, I tell the Medically Trained People. They do my obs.
13.49hrs – By now, they have discovered that my oxygen is low, and I am given oxygen.
15.00hrs – My visitor leaves me and I am once again left to my own devices. Prior to her leaving, she is kind enough to collect my drugs from the pharmacy, which required three trips downstairs. The first trip was to put in the prescription, the second was to collect said prescription and the third was to pick up my morphine which she was not allowed to collect without ID. Whilst she was gone, I took advantage of the bed next to me being empty.
I spent the rest of the afternoon feeling exceptionally hungry. I also started to watch the bag, willing it to empty.
16.30hrs – the Daratumumab was turned up to maximum speed; with still many, many hours to go. My Medically Trained Person reminded me that I had my laptop with tv programmes on to keep me occupied. I repeatedly promised to turn it on.
17:00hrs – I am given more drugs to take home. The previous prescription collected by my friend was for my pain management, this prescription contained support medication for the trail. It included Dexamethosone tablets, which I am required to take for the two days after each infusion.
17.30hrs – By this time, I had turned on my laptop, I really wasn’t paying any attention to it as you may be able to tell from the photograph below.
I now lose track of how many times I restart said programme. I was tired and hungry. All so very tired and hungry. Hunger was controlling my mind.
18.31hrs – By this point, all the other patients are gone and I am still hungry. I give in to the hunger and do something I would not usually do.
19.30hrs – More obs are done prior to this, but by this point, the Daratumumab infusion is over. Finally. The drugs are inside me and there is nothing else to be done. Well, there are things to be done. The Medically Trained Person has things to record, more fluids to give me and obs to take. On a personally level, I have to pee again. At this time, the sodium docusate I take every day has also decided to work. When sodium docusate works, I cannot deny it. As a result, I spend the next 15 minutes in the toilet.
20.00hrs – The last obs are taken, I have packed up all my belongings and I am ready to go. The Medically Trained Person asks me how I feel and I respond with ‘tired’. She admits that I do look tired but complements me on the fact that my lipstick is still on.
I leave, against medical wishes, but I feel confident that nothing is going to go wrong in the next 24 hours (or in the days after that).
20.06hrs – I get into my Uber and for the next 20 minutes, I have to listen to complete and utter drivel from the mouth of the driver. In then end, I explain that I cannot talk to him anymore because I have been having cancer treatment for the last 10 hours. He continues to talk. He gets 2 stars.
20.28hrs – I am Home!
I greet my lads and put my dinner on. I then get straight into my pyjamas. I also investigate the bags under my eyes, to see if I do truly look tired. I can confirm that I looked tired.
21:00hrs – I eat. In bed. I then take my medication.
02.05hrs – I wake up to go to the toilet and find my TV is still on. I appear to have fallen asleep during Masterchef. I turn the TV off and fall immediately back to sleep.
And that my friends and people of the internet, was my day. You can tell that I became increasingly tired as the day progressed, as I stopped recording my day as accurately as I would have liked. I think I still show that it was an incredibly long day.
Until next time…
EJB x
