I wrote a little too soon about the side effects at the end of round 2. Whilst it’s true I was generally well during the final week or so, I woke up most mornings with abdominal pain and wind that sometimes led to bowel urgency. I also never quite got my capacity to run back in the last week, finding my resting heart rate remained slightly higher than normal and raised higher during running. When I queried the latter at my review, I learned it’s because my red blood cells are not coming back up quite as quickly. Not so bad I couldn’t have EC 3 on time, but also thankfully not likely to be a sign of any permanent damage to my heart, which had been my concern with taking an anthracycline. The former problem is my gut biome trying to spring back into life and I have been given some IBS medicine for the latter half of the EC3 cycle.
The EC3 appointment was 2pm. I was pleased to be let into the unit slightly early as one of their 1:30 appointments hadn’t shown up, only for no one to get to me until after 3pm. The anti-sickness drug was given to me at 3:25 and there’s supposed to be an hour after that before the epirubicin can go in. The same nurse as last time needed 2 attempts to dock the Huber needle into my power port. I knew from the feeling that the first attempt had failed. She then struggled to push the saline through the port. A second nurse arrived and it transpired the needle hadn’t been pushed in far enough. A manual press on my chest and all was well. I persuaded them to start the epirubicin at 4:10 as I hadn’t previously had any sickness, and had no issues. 2nd tube of epirubicin, a flush, 2 tubes of cyclophosphamide, another flush, a heparin clean out, and I am ready to leave at around 6. There are only 2 other patients in sight on the ward at this point.
We live around 6 miles from the hospital and my lovely husband has been dropping me off and picking me up. I had called him a few minutes before I was finished to say I was almost ready for collection and he should set off. Once outside I called to confirm I was out but unbeknown to me, his phone had failed to connect to the car hands free so he couldn’t answer. He decided to drive through the hospital anyway to try to find somewhere to park so he could solve this and call me back. He drove straight past me standing outside the HODU entrance where I had said I would be, in his mission to park up and check the phone. He was unable to park onsite so drove off up the hill beyond the hospital to park at a beauty spot. Meanwhile I am standing outside and glad I feel fine and that it isn’t raining. Eventually reunited, we get home and I try not to grumble too much.
Day 2 passed without incident but I am finding it hard to sleep on the steroids. I had also mentioned this on my review, telling them I had only used 10 of the 12 tablets supplied last time. I was rather surprised to be given an even larger supply this time - the original 3 days of 4 tablets a day followed by several more days on a weaning down regime. When I enquired about this in the HODU, I learned they hadn’t been able to override the consultant’s 3 day schedule so had added the wind down on the end so I could choose to use that pattern from the beginning. What a waste of tablets! I took 4 tablets on day 2, have had next to no sleep so will begin winding down today, day 3.
The hair loss continues. The hair that stayed after EC1 has held on more strongly since, despite me not cold capping on EC2. I think because I cropped it very short I am no longer noticing the daily shed. I am mostly using headscarves as the wig is very hot in this weather and it isn’t really bothering me to do so. My nails are doing well with Polybalm and I am just hoping the slight drug changes get me through this cycle well. Only 1 more EC to go after this and then it’s 12 weeks of Paclitaxel. I am hoping my red blood cells will be better on Paclitaxel so I can resume proper running. At least with my port I can swim and go to Aqua classes, both of which will help me avoid muscle loss. Sadly my taste is failing again this time round too.
