E is for expectations

This is a learning process for all of us; despite the fact that it's all new territory, I still have expectations or have made assumptions about how the next few months will be and what my treatment will consist of. I was under the impression that I would be having chemo until the end of January (4 sessions) and then would start with a different type of treatment, preferably some kind of tablets. We had an appointment with my doctor yesterday and apparently that is not the case; basically the plan, at the moment, is that I will continue with chemotherapy until it ceases to become effective and the cancer starts growing again, or at least stops becoming smaller. Pffff...that wasn't my plan/hope/expectation/idea.

Yesterday wasn't a good day anyway; had a migraine which had begun the previous evening and was woken up around 3 a.m. by it when my tablets had worn off. It's such a horrid feeling, the pulsing ache, predominantly above and behind my right eye and the vague feeling of nausea. So going to the hospital for blood test, x-ray and then discussion with the doctor wasn't top of my wish-list of activities for the day. It didn't start off well when the doctor's appointments were running late even before 10 a.m. so we were waiting nearly an hour and a half (half of that time was because we were way too early because the blood test and x-ray had been much quicker than I'd thought) before we even got into see the doctor - Ed was not impressed! I wasn't feeling mentally prepared for a detailed discussion, but I still had a list of questions to go over, one of which was about the next steps in my treatment. My doctor is really good, but she is leaving the hospital this month and was clearly distracted or under pressure because of the delay but also I presume, because she is rounding off a lot of work. Not my problem, I know, but she is still a good doctor and a kind person and I understand that she has a heavy workload at the moment. Anyway, the whole discussion just didn't feel really smooth and there was another doctor sitting on in (not a trainee) and at one point they were talking to each other using medical terminology about the type of cancer I had and the therapies available. Well, suffice to say we both came out a bit fed up and I was disappointed about the chemo plan.

Well, there were two positives - the x-ray showed that the cancer hasn't grown (yippee!) and because of the negative side-effects of the chemo I had last time, they have adjusted the type I have which means I don't need to stay in overnight and can just do day-treatment (big yippee!.. no disgusting hospital meals necessary) and hopefully, the side effects will be less severe. Fingers crossed for that.

I've got my next chemo on 2nd December and then 19th I have a CT scan to see the effect of the first two rounds and, again fingers and toes crossed, they can they see some reduction in the cancer cells.

I won't meet my new doctor until January, because she hasn't started yet, but the current doctor has already said that I can be asked to be referred to the AVL (Cancer specialist hospital in Amsterdam) to see about alternative/new therapies, which might be part of new studies and trials. I have come to realise that although I do have faith in the doctors here, I need to be on top of my treatment and take responsibility for questioning things and making requests. I have read about alternative treatments which are offered in Germany, not sure why Germany... although, Germans are just efficient and advanced in many things aren't they? Well anyway, there are different treatments given by private clinics there but then you are looking at costs of tens of thousands of euros. Lots of unknowns, I don't even know if these treatments are not available here or if they would be effective for the type of mutation I have. Well, I have decided to make (another) list of questions for the new doctor about these possibilities and am going to record the conversation next time so we don't forget anything, and also to help bridge the gap between doctors.. we are bound to get different information from different doctors.

I do feel a lot calmer now; was awake again between 2 a.m. and 6 a.m. partly just relieved that my headache had gone and partly processing all of the information we had been given. I was trying not to panic and lose faith in the system and now in the daylight and with some rational thinking, I am resolved to take control, but not panic, that won't serve any purpose, except for me to lose more sleep. It would be ironic if my hair started going grey from worry before it starts falling out! is that ironic or just shit luck?!

Got an evening of 'maintenance' planned... want to do my nails and realised today as I was lying on the table in radiology that my bikini line could use some attention. I'm sure the radiologists have seen worse (I've seen worse at the swimming pool!) and aren't even vaguely bothered by a few rogue hairs but I'm not feeling exactly attractive at the moment so any small improvement is welcome, even if only beneficial to a small audience!