Dear All,
I went through my first cycle of BEP. 3 weeks of fatigue, mouth soreness, some body pains and mental fog. But no vomiting. I ate food, three meals a day and drunk water. I was really tired and some days stayed in bed alot. I had two energy bubbles a day, one in the morning and one in the evening. So I could take care of myself. I started losing my hair on the third week and on Boxing Day, shaved it off with the help of a relative.
This week was the first week of my next cycle and the most brutal week of the entire cycle. 5 days back to back at the CDU having 11 intravenous bags of chemotherapy in total for the week. Plus all the premedications. However it wasn’t the same as my first cycle. I started vomiting on the first day for three hours continuously ,even when there was nothing left to bring up and then took two hours to recover enough to move off my bed. It repeated everyday. I could barely make it to the toilet and back, let alone do anything else for myself. Everytime I moved, I shook violently and as you could imagine, the four squares of Salada I managed to eat over an hour wasn’t sustaining my body each day.
By Thursday,the hospital admitted me onto a ward because I couldn’t stop shaking, eat or drink without bringing it back up. And this was all on anti-nausea medications, plural, that I would also vomit back up. If I wasn’t asked my name every three minutes, I don’t know if I would have been able to tell you that. The hospital is very strict about my protocol and won’t let me postpone a day without a really dire reason,so I had my chemo on the ward on Thursday and Friday. Friday I was discharged. I felt like an actual person on Friday night.
But this weekend at home has been such a challange. I don’t have those energy bubbles to do anything as I did in cycle 1. The dietitian wants me to drink 4 protein nutrition drinks, eat regular meals and drink water all in the one day. I am struggling to follow through and deal with the nausea and not vomit. My heart rate jumps up everytime I get off my bed. I know the cycle only gets worse the more I don’t try to leave my bed and do something. But the heart rate climbs and I feel like I am going to fall over when it does. The mornings are better, but by evening I am shaking again, even eating and drinking. My temperature is in normal range. My blood tests at the hospital are all clear.
I managed to shower today,but had to stop before I got in the shower and lay down for 10 minutes before I actually got in because my heart rate spiked. But the shower felt good.
But I am afraid. I am afraid that I am not going to get stronger again. I have chemotherapy again tomorrow. But only one bag this week. And then a rest for 6 days and then repeat the next week. I got more energy back the third week last cycle,so I am hoping that repeats this time too.
But right now I am afraid to go to sleep at night incase I am too weak to wake up or I will vomit and suffocate in it. I am afraid to try to do anything normal off my bed incase I pass out. I am telling the people in my house that I don’t feel strong or am unwell and need help, but they don’t respond much to that. They are living their lives as normal and I am stuck in my room, trying to figure out how I am going to get the next thing done with the energy I don’t have.
But most of all, I am afraid that I have another cycle,right after this one and I have to endure another week like this one. And that it will be worse then this week.. I honestly don’t know if I can do it. To purposely walk myself into that room and get hooked up to a pole and put this chemotherapy into my body, knowing what it does to me and scraping by, just. Logically my brain knows why I am doing it,but it is also screaming WHY am I doing this to myself if I am so sick. If something makes you this sick, you stop it.
I am afraid I won’t make another 5 weeks of this or that I will feel like this for the rest of the time,everyday. It is an incredibly lonely and isolating experience. I feel every day is on repeat. I feel I would support my relatives in a much different way than I am being supported, if they were in my position.
I have mental health support, but I want my body to stop feeling like this.
Did anyone have a similar experience with their treatment and find small things that worked for them? Does anyone have any suggestions?Body or Mind? My mental fog is pretty bad so I can’t think in depth too much. So any replies are welcome.
Thank you for reading, even just solidarity at this point is very much appreciated.
Milo01
