The last few days have not been the most pleasant I have ever had. It turns out chemo has a reputation for a reason. Still it could have been worse to be honest so I can’t complain too loudly. (Caveat, so far, still waiting for some lovely side effects that may happen).
I checked into Ipswich hospital on Tuesday and they began treatment Wednesday lunchtime. I was in a ward with a very heavy snorer and someone who had been hiccuping for three days (poor bugger) not much sleep was had.
On the Wednesday it was rituximab first before the main show. Unfortunately and as per the previous four times I had a bad reaction. They even started it super slow but I vomited within ten minutes. See veiny red face photo here. Honestly I think that stuff hates me.
Luckily once that was out of the way it was ok for a bit, but I had an increasing temperature and got up to 102 before they had to stop it again for a few hours. I was also feeling sick and breathless. They pumped me through with paracetamol drip to drop the temperature, which worked. Then they started again on a low setting with the plan to get the rituximab through in a very slow ten hour starting 10pm, as I had to have Bendamustine the next day. Given my reaction they needed to observe me every 15 minutes (which is a blood pressure check and a temperature check) through the night. Not much sleep was had again.
This went ok and I was relieved when it was done. They then gave me the Bendamustine. It’s a chemotherapy drugs that gets pumped in within 30 minutes. It’s bloody cold as it can’t be served room temperature, so it freezes the arm around the canulla. It also has a black bag over it as it reacts to sunlight. Glad it was going in me….
I didn’t have any reaction to this, other than the cold. Apparently you mostly don’t as it goes in. It’s much more a long lasting drug whose reactions can show up a week or so later (although you can have an infusion reaction as well, I just didn’t which was a nice change of pace after Rituximab).
About twelve days after I have it I will likely dip in red cells (oh good) and neutropenia and other bits, so that’s when the danger part happens. They give you many drugs to manage this.
I then had two bags of blood, as I was there anyway, and they managed to get my hb up to 6.3 which is a record this year.
That night I slept in hospital again and then had another bag of Bendamustine. That was ok too, and I eventually got out of there at lunchtime, as it was Jo’s birthday. I didn’t escape completely though. Turns out I need to take enough drugs to run a pharmacy for the next few months. These are the pills. I have been working on a calendar for them all.
Today, after being out a day and a half, I took 12 pills. Some are twice a day, some once. Some start on day seven and one has to be taken Monday Wednesday or Fridays. I half expected them to go further and ask me to take some on a full moon, but it didn’t quite go that far. It’s a shame as I had the stone circle planned and everything.
I also have to inject myself into the stomach, and that starts tomorrow. So they gave me a jolly yellow bin to keep those in when done.
In terms of how I feel the first night I woke up every two hours to wee as I had been pumped so full of saline and other liquids that my body was basically a water bag. So that was annoying. I also found the pills were making me a little bloated and had some slight abdominal pains. Last night was better but I’m still bloated and gassy.
Finally I’ve been tired and woogy on and off during the day (more on than off) and I slept for another three hours in the afternoon. I’m hoping this is just due to lack of sleep but I suspect my energy levels and general body processes are going to be off with all the drugs. Today I played with the kids for an hour and a bit and am now knackered, so energy levels are low.
So first chemo had. Now I have to get a blood test every week until the next one on the 19th of May where we do this crazy thing all over again! Only five more to go though.
One highlight was that I had my first full english for a year (I can never be bothered to make them, but I do like them). Hospital food is underated.
Another was the ability to keep in contact with people, especially my kids who sent me some videos. Grace:s school also sent us photos and this was one I liked.
Anyway that’s all for now. With a blood test Monday, an ultrasound and blood transfusion on Wednesday the days will just fly by until chemo number two! 🙂