Cycle 2, Day 7

Second week of chemo done. No complications this time. My first two days as an outpatient went smoothly, and the second two days as an inpatient as a precaution to make sure that anything like fluid on the lung could be dealt with quickly. This meant a repeat of last month’s benefits such as air conditioning and excellent hospital food, as well as some nice time spent on the balcony of the hospital in the evening. I was still feeling a little bit of fatigue from the first cycle but no other side effects really until day 4, when it caught up with me and I spent most of the day with the curtains closed, dozing away. However, all the blood tests I had during the week came back normal, except with slightly low potassium so I’m again just taking a pill for a few days to keep that topped up, and making sure I have bananas on standby. The doctors and nurses seemed very happy with how things went last cycle and my condition after this round of chemo so I was discharged in the evening. I felt quite groggy leaving hospital Friday evening, which could well have been a result of lying in bed in the dark all day. I made the last minute decision to bail from the gig I had tickets for (the second time I’ve had tickets to see the Menzingers this year and ended up not going!) and instead spent it on my balcony which was much more chilled and preferable to being in a hot sweaty room with a man screaming loudly.

Saturday was a pretty rough day; I had very little energy, my taste was completely off and my stomach kept making threatening signs, although didn’t follow through on anything. I think a big part of the malaise was that I didn’t eat much until the evening meal – after this, and having gone for a walk after the sun had gone down, I felt much better. Today is also an improvement – still feeling fatigue but less so, and nothing else too noticeable other than general weakness, feeling drained and generally being irritable. In the last cycle it was the start of the second week that I started feeling other symptoms (metallic taste, profuse sweating, dizziness, tingling fingers) so I probably still have that to look forward to, but the fact I’m feeling better than yesterday is a huge positive as I thought it was going to be a linear decline over the next week. I’ve noticed my hair is starting to grow slowly as well, which should last about another week until the second cycle impact hits again and it probably disappears for good and I fully transform into one of the War Boys from Mad Max.

Embracing baldness

My mitotane level is a bit all over the place – it needs to reach 14mg/l in the blood to be at its most effective and has so far been recorded as 5.9, 5.5 and 8.0, so my dose has been upped to 4 pills, 3 times a day, which is the maximum they can do. It does usually take a while for it to reach the required level. Although the mitotane has anti-cancerous effects, it is separate to the chemo so the fact it hasn’t reached the therapeutic level yet isn’t critical to the effectiveness of the treatment or the reduction of the size of the tumour – it is more about symptom control.   

I have a scan a week Monday which will be an indicator if the chemotherapy is working, and they can make a decision on how to move forward. If its working, I have 4 more cycles to look forwar to, if its not, who knows. Until then the focus is on having a slightly healthier cycle than last month – less cheesecake, more yoga and reading, and probably a fair amount of Peaky Blinders.

The last cycle flew by and went a lot better than expected symptom-wise. I would go as far as to say I had a great month in general, not least because I spent almost every day surrounded by friends and generally with everyone in good spirits. It was quite common that I forget the situation I’m in which is a very positive sign. Thanks, again, to everyone who donated to my Macmillan page, as well as a huge thanks to my friends who got involved as well. They are a great charity and deserve every penny.