Cycle 2 - Mid-way check & cancer elsewhere....

Today we went to Guildford for the cycle 2 mid-way check. Because last week I had some really awful times, we wanted to flag these to TC to get their point of view.

I didn't blog about the awful times because I couldn't, I was physically unable to but I also mentally couldn't. I decided to take myself off zopiclone because I was frightened about the addictive nature of it. So I came off, and then I didn't sleep. I had a few days of absolutely no sleep at all. Not even half an hour. I was taking non-herbal Nytol (diphenhydramine), but it wasn't really working. I was also stressing about my return to work. Even though work have been fully supportive, just initiating an official process was pretty scary. So I was having a combination of no sleep, stress and therefore severe anxiety.

Last Friday, I was the worst I'd even been. I was shaking non-stop all day, it was really horrible, I couldn't get it under control. I managed to do a bit of work in the morning, but I was shaking so much I couldn't really control the mouse or keys. I had awful dark thoughts and couldn't process the simplest of things. Even the thought of letting the dogs in the garden was overwhelming. I felt really very mentally unwell.

Today, a week later, I feel betterer. I still have some shakes, but they are a fraction of what they were. I restarted the zopiclone on Monday and the very night I took it I actually slept. The night after I slept again, less well but still a few hours. On Thursday I got driven into the office (thank you Colin) and worked all day. I'm supposed to be doing a phased return and only doing 12 hours this week, but I've actually done about 24! I need to speak to the "people that be" about this as if I'm doing a "phased return", I need to do it properly!

Anyway, back to today's meeting. I turned up and had my bloods done. The nice nurse found a vein that behaved and took 4 phials and then I went off for my ECG. Obviously I was worried about my QTc given the past issues, but it was 440 which is within the protocol limits. We will get a call later with the blood results, and as long as they are normal, or within range, I'm good to stay on the highest cancer-kicking dose of 3 pills.

We spoke to TC and Avril about the severe anxiety and they listened carefully and wrote down everything I was saying. We discussed it all and they said that going forward they could prescribe me diazepam or lorazepam but that they didn't want to prescribe it immediately because of the addictive nature of it and they want me to try without. Hmmm. I understand why, but I simply cannot have another day like last Friday. TC said that the anxiety is also probably down to my oophorectomy and lack of hormones, which sadly they can do nothing about. So I kind of feel a bit stuck. I need to just constantly take the zopiclone and see what happens.

I think it was probably a combination of no sleep, coming off zopiclone, return to work stress, general anxiety (because wtf not?!), lack of hormones and fear. Now I'm back on the zopiclone and "official" work is actually not as scary as it seemed a week ago I think I can do this.

In other news, TC just casually dropped in to the conversation that when they removed my ovaries they analysed them. They actually had some cancerous cells on them. Fuck. Apparently it changes nothing about my diagnosis as they are now out (and thank god they are) but they have to tell me anyway just so I know. So going through that op was bloody well worth it then. Despite all the night sweats, hot flushes and hormonal changes that I now face as a small part of my daily set of challenges, the fact I had cancerous ovaries would have been yet another battle to face. Bloody hell!

End of Cycle 1

At the moment it feels like I'm having non-stop hospital visits. It's so draining and I just want some normality back in my (and Rob's) life.

It feels like Groundhog Day. We went to Guildford hospital, I had my bloods done again, had an ECG done again and then met with Avril. We talked through my symptoms and about how sad I feel. I just really feel low. I need to pull myself out of this pit of sadness but at the moment it just feels like I'm wading through sand. I told Avril about my tooth pain and she said I was to keep an eye on it. She also checked my last bone scan and there were no mets in my skull or jaw which is a good sign. It doesn't explain the pain though, perhaps I have been clenching my teeth in my sleep but it just feels really localised.

Anyway, after an hours' delay, we met with TC. My QT rhythm was normal so I'm back on the largest dose of ribociclib - 3 pills. I'm bloody nervous of this but I have to try and trust that they know best.

I asked TC about the dependence on zopiclone and he said not to worry, if it's helping me sleep then just to carry on with it and prescribed me another month's worth. I hate how it gives me a metal taste in my mouth though and also that I just don't fully sleep still. Everything I have read about it says that it's addictive, you shouldn't take it for more than 2-4 weeks (I've been on it for about 2 weeks now) and that you should only really take it if you can guarantee 7-8 hours sleep. I definitely am not getting that, I wake up all the time with night sweats. I'm struggling to know what to do!

We then had to wait around for 3 hours(!) for the next cycle of prescriptions to be dispensed and eventually we drove home.