Sorry for the lack of update - lots of appointments, the world's quickest house hunt and plenty of thinking being done over the past week!
The biopsy confirmed ACC and therefore the chemo regime is still EDP (etoposide, cisplatin and doxorubicin) plus mitotane. After weighing up the pros and cons I've signed on the dotted line and start on Monday.
The cycle is 4 days of IV on a 4 week cycle. It's 2-3 hours as an outpatient on Monday and Tuesday and then longer days of about 6 hours on Wednesday and Thursday. I may end up staying as an inpatient on those days depending on how generous the insurance company is feeling. Mitotane is taken as a pill a few times a day. The plan is to do 2 cycles and then do a scan to see how effective the chemo is on reducing the size of the tumour, and then deciding on whether to continue it (for a maximum of 6 cycles) or look at other options.
Apparently the days I'm receiving the chemo I will not feel too bad due to it not yet hitting me fully and also the steroids/drugs they give whilst I'm in the hospital doing a job. Days 5-15 I should expect to feel pretty rough and will be very low key. Then during weeks 3 and 4 I will be recovering and whilst I won't be doing any triathlons I should be able to leave my bed a bit more often, get to the shops, visit friends etc. Maybe even work! Although it's all dependent on how my body reacts, so will just have to wait and see.
Once again the oncologist had a smile on his face as he ticked pretty much every single box on the form of potential side effects, so I should expect a pretty fun few weeks. A lot of them they can try and counteract (e.g. Anti-sickness medication) but it might take time to work out what works best. Due to the doxorubicin I will definitely be going bald so I'm going to look into changing my style to accommodate.
I'm moving to Canada Water with my amazing sister this weekend. It's a new flat next to the station complete with balcony and rooftop garden. My main concern is the over the top energy efficiency of the flat meaning it might double as a sauna in this weather. I'm also looking forward to recommencing our childhood battle for the remote control whilst the world cups on.
As a general update, I'm still feeling pretty well. I'm getting tired more than I used to and I have points where I have no energy but it's hard to say if that's due to being pretty mentally drained or if it's a physical symptom. The pills I was given to lower my cortisol levels seem to have had an effect, and I have noticed some of those symptoms are not as bad now. For example, I'm sleeping better than I was. The sleeping pills might have a part to play in that as well.
Focus for the next 2 months is keeping a positive outlook during chemo and hoping the side effects aren't as bad as I'm anticipating.