F is for future

I keep saying that we are taking things 'day by day', which is true to an extent because I generally think about the appointments I have for the following day or week and don't think too far in advance, but obviously there are 'bigger' things to look forward to: I'm going to see Tom Odell in concert tomorrow evening!, Caela is here in 6 sleeps' time!, Karen is following in Caela's footsteps only a few days later and we are flying home for Christmas... all of these things I'm really, really looking forward to. So I am kind of planning ahead, but equally it's hard to make too many plans because I don't know how I will be feeling.

Last night I had a group lesson and we were trying to set a date for our next lesson, luckily we managed to find a date in only two weeks' time, but there is always a chance that I will have to cancel, and for that I do feel guilty. Of course, the students completely understand the situation and they say it's absolutely no problem but I hate letting people down, even with a genuine excuse.

Apart from appointments, having visitors booked in, flights home and lessons planned, thinking about the future in a more abstract way can be a little scary. I have moments when I wonder if I will be here this time next year; it is actually really hard for me to put that in black and white because I am so focused on trying to think positively and convince myself that I will defy any prognosis and be around for years to come, but burying my head in the sand isn't sensible either. There is a risk that I might not be here in 12 months. I am concerned about my treatment plan so am making a list of questions to ask the doctors, including ones about alternative treatments like hypothermia (heating the body to over 40 degrees which apparently kills cancer cells) and immunotherapy or other drugs. I appreciate that my particular mutation of cancer has to be compatible with each treatment but I just want to know that every possible thing is being done and I'm not just being sent down the standard route. I am going to ask the doctor what he/she would do in my position.

If a treatment like hypothermia is something I want to try, then I need to think about financing it, and I am considering crowdfunding because it might mean going to a private clinic in Germany. I've had a look and there seems to be a lot of people from the UK seeking treatment in Germany because they can't get treatment fast enough at home. I don't know if things like hyperthermia are available here and we can still be referred to the cancer hospital in Amsterdam. Ok, we didn't have a positive experience last time, but we complained about that and about the doctor we saw so it is in my notes that we are not to see him again.

So back to my immediate future.. what's in store for the rest of this week? Well, today I have a lesson, a phone call with a company doctor from the University, and a visit from my sister-in-law and my nephews which will be nice. Tomorrow it's Tom Odell.. finally! We booked the tickets ages ago and it was originally scheduled for mid-November but he rescheduled it, (I was a bit pissed off at the time but actually worked out quite well because I wasn't feeling great on 17th November!) to 1st December. Friday I'm going to see a physio in the hospital for an intake interview to take part in a fitness programme for cancer patients; I really want to get started doing some exercise again.. I am doing some gentle exercises every day, bit of stretching and some upper body work but my hips are both really weak that I daren't do too much because I can imagine breaking something! Yes, sounds dramatic but unfortunately it's true, my hip and pelvis bones are fragile and I need to be careful. The physio can see all my scans and then make a fitness plan for me, so at least I can ask what kind of exercises are safe. I haven't been cycling in the last few weeks because I haven't felt like it, but actually walking any distance at all is also uncomfortable for my right hip now.. FFS! so cycling would probably be easier.

My final appointment of the week is my second attack of chemo; so Friday 14.00 - 16.30 I will be hooked up and then I can come home. I'm really apprehensive about my reaction this time, I really, really, really hope that I can cope better than last time. At least I can be prepared with what we have in the house for the weekend and prevent having any strong smelling food in the fridge and be more aware of avoiding cooking smells etc. I've got the scented candles in already! Ed is going to have to forego his stinky cheeses for the time being!