The plan

Ok,  so I think this post will be half dictated half sort of typed, which could be a whole lot faster or significantly slower than either or.  my left side is working well enough  I keep going to do things with it assuming it'll work, and then spilling coffee or putting my hand in my food or hitting the completely wrong but on the keyboard. So it really is much better and just a bit clumsier than I used to be.

 I apologise, it has been somewhat longer then I planned to leave it between blog posts. The fatigue just turned out to be considerably greater than I had expected, plus I'm on rather high doses of various analgesics. Not my favourite. The good news is I have finished radiotherapy on my brain! Yay! :-) I'm also looking a bit more like myself which is very important to me, having the energy to dress as I'd like; unfortunately the dexamethasone has the unfortunate side-effect of making my face puffed up and adding a chin-sigh. I do miss my cheekbones. Though of course now I have finished the radio on the brain it means I can begin to cut down my dose of the dexamethasone which is the steroid that works to alleviate pressure in my brain. Cutting down the dexamethasone has to be done very gradually which is frustrating. But necessary. Hopefully there won't be problems with cutting it down though it is possible/probable that I may start experiencing some headaches or other symptoms and have to slow down the process even more. Ha ha I just want my face back.

 I was getting to a very high level of freedom and independence of movement until a few days ago when I started experiencing more intense pain in my legs. It's all very strange, I've had this pain since I was in hospital and was not really sure what's causing it then either, in the last 24 hours or so though it has become quite bad and movements difficult once again. Conveniently though we were in the hospital yesterday anyway to see my oncologist and so also got to catch up with my palliative care guy who adjusted my doses of various things leaving me significantly better this morning there was yesterday morning.

 It was pretty bad timing actually to have been in so much pain yesterday; it meant we all had very little rest and I was very full of breakthrough pain medication making everything much harder to process. Frustrating, when you're trying to take on what your oncologist is telling you about your future. Not that there was much in the way of specific dates or details really available.

 On Monday morning I will be having a PET scan (blah) which will be tedious and early but hopefully at least the machines will be working and I won't have to be in there too long. After the PET scan the next appointment we have is Thursday with my oncologists again who will by then have double checked with some other specialists about exactly what to do next. The plan is more chemotherapy starting most probably next week, though it's unclear if that will be on Friday after the appointment or before then. It will be one of the drugs that I was on beforeI'm quite certain as well as a new one.

 Though nothing is set in stone I think it sounds like it will be like 3 rounds of this regime, probably at similar intervals (3 weeks) to what I was on before. After these 3 rounds we will have another PET scan, see how everything has responded to those drugs and then and make a decision about high dose chemotherapy, which is now on the table. I know I have discussed high-dose on the blog before but are just quickly recap. Basically it's a really high dose of chemotherapy delivered over like a week followed by a month or thereabouts in the acute care ward/bubble while they give me back my stem cells so my immune system can recover.

  it is possible high-dose chemotherapy won't go ahead it all depends on how I respond to these new chemo drugs and how crook I am. Radiotherapy other places is also very likely considering the pain I'm in, plus it's not such a bad thing to do radio at the same time as chemo if it's places like legs which it would be for me.

 But yeah so at the moment just hoping my movement will improve for the coming week, so I'll be able to see people and get out a little bit.  It would be great to be able to have more visitors and even go out with friends, both are still quite difficult. Just wanted to thank people for their enormous generosity again and apologise for often not being able to come to the door myself and stuff.

 I have now officially pulled out of my world youth international trip, which is sad but yeah it really wasn't going to happen at this point I think it's safe to say. I do feel the need to try and promote them; it's such a great program I am sad that I had to pull out. Maybe one day, hey?

 Fatigue from radio can last quite a while, so not sure how long it'll be before I have much energy. Plus of course there's also the drugs and chemo starting soon, so I don't think there is going to be much improvement in the regularity of my blog posts unfortunately. Though I'm really trying to get organised with responding to messages at long last.

 Well I'm struggling to keep my eyes open, time for a mid-morning nap ha ha! oh and I will try to remember to post a photo or 2 of my radio mask. It's too weird not to share with you all :-)