This is about the first few days of chemo. I will try to be very detailed and a bit explicit with some stuff. Before I got chemo I didn’t want to read or know anything about what the expect, so if you are reading this and think the same way, probably skip this post. I wouldn’t have liked to read what I am going to write. I didn’t have many side effects and overall was quite good though. I am writing this from memory, I had planned to keep a diary of the treatment but I was just mentally incapable of writing anything down, I just didn’t feel like it at all. Now, months after treatment, I still had vivid memories of those days, as there were so many emotions and rollercoasters along the way.
This is Day 1, 2 and 3 of escalated BEACOPdac chemo (BEACOPDac | Macmillan Cancer Support ; NSSG Chemotherapy Protocol)
----
We (my GF and I) arrived at the hospital around 8am. It was going to be a long day because it was the first day but also because I had to get a PICC line ‘installed’ in my arm. Like many others, I was not looking forward to it. I didn’t mind the idea of having it but the concept of inserting over half a meter of tubing through a hole in my upper arm just sounded a bit mental. For my type of treatment this was a must, due to the number of times I would need treatment or bloods taken, but also due to the risk of extravasation when having vincristine.
For the fitting you lie down on a bed and the nurse explains to you what’s going to happen. I just said to her please don’t show me the line as I don’t want see the size of it, but when she measured my arm and an approximation of the length required I got the idea anyway. You get a little injection of anaesthesia (I think it is Lidocaine) and then you get it installed – I won’t describe the procedure cause I wasn’t looking, but you just get the line pushed inside one the main 3-4 veins/arteries in your arm. I thought I would be getting it on my left arm as I am right-handed, but apparently it is best to have it on the side which is farther away from your heart, obvs that’s the same arm for everyone. The procedure is painless, you just get a bit of pressure on your arm and you feel some sort of palpitation on your upper arm as the blood flow on one of the veins is disrupted slightly.
What can happen, and this happened to me, is that the vein might contract due to having a foreign object inserted. At this point the vein is not going to open again and so the nurse has to open another pack (everything is sterile so the whole process is as aseptic as possible – the pack includes the gloves and the gown etc) and try through another vein. This time it worked and then the next step is to secure the line in place with a metallic insert; this is one part to watch out over the next few days, as the insert bit has nickel and some people have allergy to it. If it happens there is an alternative material.
So, the PICC line fitting is fine, the worst part for me was being covered in the plastics they put over you to preserve aseptic practice… there is no transpiration through it so I was super sweaty by the end of it!
Back to the ward the nursing team shows you where the toilets are, where to get water and coffee and some snacks. They work hard to make you feel comfortable and calm, the people here are just great, not many of us could do this job. Since I was there early for the PICC line they had given the go ahead to the pharmacy to get the drugs ready. The first you get is some saline through your newly installed PICC line, I was very careful to keep this arm in the right position and not fiddle with the line too much, as I thought I could get it disconnected or pulled from my arm, but trust me it is very difficult to do so.
Then you get anti sickness drug through IV – on later days you have the option of taking the pill 30 mins before treatment or to get it through IV. I got ondansetron. A bit later you get the first one… Doxorubicin! Some people call it the red devil (it is known by many people as this is used in many chemo treatments), it is a bright red solution which just give you the vibe that is going to be hard on your body. This you get it through a syringe which is flushed through the arm over 15 minutes or so with the automatic dispenser. Doxorubicin is the A on BEACOPP because of the commercial name of Adriamycin which I guess was the first name it had before becoming a generic drug.
Up until this point I was fine, but it was the first out of three so I was kind of panicking about how the other two would be. One of my biggest fears was getting an allergic reaction, these are complex chemicals which your body has never seen and they just go around interfering with all fast dividing cells, so I was thinking there was a chance your body could just reject them.
Before getting Cyclophosphamide you get and IV shot of Mesna, which is a drug that helps preventing the irritation of the bladder lining. You take a couple of pills of Mesna 3 and 6 hours after the Cyclophosphamide IV to keep that protection ongoing for the first day. On your first cycle you also get another drug to prevent uric acid build up, I think allopurinol. You don’t get this for the other cycles.
This IV was going through 1 hour or so. Because I had the protocol on hand and I am a bit of a nerd for these things, I was calculating how many micro or miligrams of drug I would need (based on weight) and how many they have prepared in the pharmacy, making sure it was correct (lol). Before every drug is given to you, the nurses double check it is the right one and this has to be done by 2 people. I don’t know about other people experiences but the system in place prevents mistakes and I guess it would be very unlikely that you get given other person drugs. After 15 mins of IV I was feeling miserable, like I was at peak flu days – headache, nose pain, stomach upset, just baaaad. I mention to the nurse how is it possible that I was 100% 20 minutes ago and now I feel like I can’t even stand up. This got me scared and it was yet again a realisation of how serious this was!
By this time it was 3 pm or so and I hadn’t eaten anything. I didn’t feel like eating anything. I had drunk about 1.5L of water since arriving and given 1L of saline through and I hadn’t even gone to the toilet yet. I did go and luckily the nurse warned before that my urine would potentially be orange due to the doxo, which was great advice so I didn’t panic when I saw it. Back to the chair the more I drank the more the water tasted bad and metallic, which is a side effect. So I mixed a bit of juice and had a lollipop.
Then it was time for Etoposide which comes in a massive 1L bag (cyclophosphamide is 0.5L), I was wondering how would my body take all this fluid without exploding. I was hoping this bloody etoposide was not horrible because you have to get it the next two days as well. Half an hour through the IV I started feeling some palpitations and I got really scared, I think it was a mix between the stress accumulated over so many months and the actual drugs having an impact on the body. They stopped the pump and I got an ECG done, all fine, so I continued 30 mins later. I finished it and I was fine, just feeling miserable and unable to eat anything. They flush some more saline and then they bring you a bag/pack with all the drugs you are taking home: the mesna, the steroids, anti viral, anti fungal, anti bacterial, anti sickness (ondansetron for the next morning and metoclopramide to take if you have nausea at home). This was mad. This was 5.30pm or so, had been there for 9.5 hours already.
They weighted me before leaving and I was 3 kg heavier than when I got there in the morning lol
Took the taxi home (50 pounds now!) and just went straight to lie in bed not even wanting to check the phone or a movie. You just want to be there hoping that you will feel better later. I wasn’t sick but if I drank water I felt a bit like I could throw up. I tried a brank flake and I couldn’t even have it because I felt like vomiting. When you feel like that your brain somehow chooses the food you would take, and you forget all the nice stuff, and you just want all bran flakes or plain bread, like absolutely nothing else was coming through my mind. I had to take the steroids (prednisolone) at it was already 6pm, which was a big mistake. These should be taken in the morning.
I didn’t have any food and at 10 or so lying down I felt some palpitations again so I called the 24/7 nurse support, they advice me going to A&E just to check it was okay. I went to the other hospital which is next to my place (and where I would be going for treatment the following week), fast tracked and seen quickly because of the situation. ECG done and nothing wrong so discharged and back home to get some sleep. I believe it was the combination of the previous time and the addition of the steroids, which naturally make you more nervous and increase your hear rate.
The worst part of this was to think that tomorrow you had to go to hospital again. And then again the day after. That was horrible. When I was a kid I read a lot of Harry Potter so it reminded me when Dumbledore goes to this cave to find another Horrocrux and he has to force himself to drink this liquid that is killing him. I felt the same, like you are going to hospital again next day to get even worse, it is a difficult thought to process.
Next morning I had a glass of water and maybe 10 all bran flakes as breakfast. I couldn’t eat anything else and those flakes went in 1 by 1 because otherwise I would throw up. The issue is that when you take steroids you should have some food before and avoid an empty stomach, but it wasn’t possible. After taking 8 pills (ondansetron, 4x steroids to get the right dose, the 3 prophylactic drugs), got a taxi to hospital, this time with my parents, which was not a good experience as they were super nervous (who wouldn’t!) and they just made me more scared. Mum came with me to the ward for the whole day while my dad just walked around and about the hospital cause he was just too stressed to sit down.
Nurses ask you how it was etc which is very nice and they are great people. Because pharmacy doesn’t prepare drugs until you get there, I was waiting about 1.5 hours to get the Etoposide again. Since I had some reaction the previous day, they reduced the flow and had it over 2 hours instead of 1. During those 2 hours I think I went 6 or 7 times to the toilet and I ‘peed’ all the liquid from the previous day. Day 2 is also the time for dacarbazine - you get this drug as IV too, earlier versions of this treatment included procarbazine which was taken as tablets at home. I understand that because Dac causes less issues with fertility than Procarbazine, it was changed and now people get Dac in the UK. I was feeling better and that was a relieve, I came to understand that Etoposide and Dacarbazine weren't a big deal in terms of your side effects, so I was more positive about my next day. I had some banana later and maybe a couple of biscuits, but I wasn’t hungry tbh.
The evening was much better than day 1. I was still in bed all the time but I wasn’t feeling as sick, which was great. I had some bread for dinner but not much else, just trying to drink as much as possible.
One awful thing with chemo is that the smell of your wee and sweat changes a lot and gets a bit of a metallic smell, or at least that’s how it was for me. My pillow was just stinking after two days, and it was the kind of smell that stays with your for a while.
Day 3 was same as day 2 in the morning, perhaps a bit more food intake. The steroids just get you super shaky and stressed when you first start taking them, it’s like you had 8 coffees. But they were not making me hungry yet, this would come over the next few days. Day 3 is Etoposide and Dacarbazine again and then you get some granulocyte stimulating factor injections (G-CSF) to take home for later in the week.
So I got home and the best thing was knowing that it was Weds evening and hospital was not again until next Tuesday (Monday was a bank holiday). Still miserable days but at least you could be at home. Another interesting thing was having the resting heart rate at like 70-75bpm when my normal one until then had been like 50bpm or even a bit lower at night. I just felt a bit restless.
I started being really hungry by Weds afternoon, and this was the same over all my cycles… From d1 to end of d3 I wouldn’t be able to eat more than a biscuit at a time and then all of a sudden you feel like eating sooo much. These are the steroids paving the way.
Will continue on another post. Sorry it might be a bit too detailed but had to get this out of my chest and it might be something others can relate to. Thanks for reading and for those who commented on the earlier posts, it does make me feel like this is ‘helping’ others and that is great. On the next post I will try to cover the rest of the cycle, but also get to what you see and feel in the ward and your support from the medical team during those days.
