Thursday, October 24, 2013

Feeling frustrated, and ticklish

After yesterday's post about feeling grateful, today I am feeling less so. I saw my neurologist today for my regular checkup but I went in armed with lots of questions. After the last few months of bouncing around on the dex, to say that I am feeling frustrated is an understatement.

The great thing about my neurologist is that he understands this. And I'm sure he wants me to feel as good as I can, but I guess there is only so much we can do.

Obviously, nausea (and fatigue) are still my main problems. He remarked that it is no wonder I am nauseous as "your tumour is tickling your cerebellum and it doesn't like that". I actually laughed out loud at that, and yes now, all I can see is "Tickle-me-Elmo" inside my head, laughing away.  We discussed whether there were any other medications I can take. He listed a few but doesn't want to put me on them due to side effects. Plus they are really just managing the symptoms. James had found a recent research article that discussed another drug - Emend - and it's effects on brain tumours (in that they help them shrink). However my neuro hadn't heard of it and a quick look at MIMS shows why - at $130 for 10 tablets it puts it out of the reach of most people. Plus it is usually only used in a chemotherapy cocktail. Nevertheless, he said that he would talk to my oncologist about it and whether there was any trials or samples or something.

There is also a progesterone blocking drug we could try, but he seemed a bit reluctant to try that as we don't know what type of receptors are on the tumour (oestrogen or progesterone). He did agree that I should talk further with a gynaecologist about it though. He was happy to refer me to my old OB (and in a strange coincidence, he mentioned that she lectured him at uni, and was really tough. Tee hee I can imagine my OB being like that).

We discussed driving - he thinks I am fine to drive although not long distances. And working - he thinks that perhaps I shouldn't try until the new year. Which is a bummer, and a relief. Especially since I can't find one at the moment, although a job ad has just popped up that would be perfect so I may well still apply for that one and see what happens. If I don't get that, I will just stop worrying about it, but it does mean I may have to talk to centrelink about what I might be entitled to.

Otherwise I am to stay on the dex until January at a dose of 1mg. I had a bit of a nystagmus today which is a bit of a worry and obviously why he wants me to take it all a bit slower. He said it may take up to 6 months to get off it, and then my brain could take 6 months to adapt. He also didn't have all my test results from the hypertension specialist.

So definitely feeling very frustrated. And perhaps a little more like this......than a happy ticklish version.

Tuesday, October 22, 2013

Feeling grateful

Today I am feeling grateful for many things.

I am grateful that James can work from home and is flexible enough that when I am struck down by a gastro he can take the day off to look after the kids. And I am grateful that he does this without even thinking.

I am grateful for two beautiful, compassionate children. Who, when they realised I was sick, wanted to first take me to the doctor then make me a get well card.

I am grateful for sunshine that will dry my mountain of washing, and also heat the pool so we can have a swim later today.

I am grateful for scientists, and pharmaceutical companies who make drugs that make me feel better. Particularly zofran. I am very grateful for zofran.

I am grateful for friends near and far who offer me kind words of sympathy, hugs (virtual or otherwise) and something to laugh at.

I am grateful for so many things this day. Is there anything you are grateful for?

Sunday, October 6, 2013

A matter of geography

As I mentioned in the last post, one of the big things we have done in the past few months is enrol Charlotte in school (prep) for next year. I found this quite an emotional thing. When we started trying for a baby, we only really counted on the baby part. I never expected to have a schooler! (as Charlotte calls them).

One thing I also never expected, was the depth of emotion I feel about the issue of schooling. Now I respect every one's right to a different opinion on this matter. We all have our own reasons for choosing a particular school. However, one thing I strongly believe, is that you don't need to pay for a good education. Especially at the primary school level. I've heard lots of arguments (Oh the school near us is a bit dodgy, private schools have better teachers, you get more opportunities at private schools).  I feel it is a bit rude to teachers everywhere to have these assertions made - all teachers go through similar university courses. They all go to work as dedicated and enthusiastic as the next one. And I know many a person who went through a private school who didn't get the opportunities they wanted (either they couldn't access a subject, or needed extra tutoring etc) or even a quality teacher.

We feel that should the children need extra tutoring, or "opportunities" then we can use the money that we may have spent on private school to fund this. The cost of one year at a private high school would pay for all of us to go on an art field trip to the Louvre, or perhaps a history tour of Rome. I'm sure we could find lots of necessary field trips.

Nevertheless, we still had to make a decision about which local school to send Charlotte too. We are very lucky, in that we have several quite close to us. Actually, we have two that are almost exactly the same distance apart. This year, one of them has enacted a catchment plan (where they draw a line and say children in that area can attend, all others have to go on a waiting list). Technically, we fall into that school's catchment. Given that school is in high demand, it would make one think it was superior. However I have looked and looked, and I can't see much difference. Yes it is bigger (which is a negative in my opinion); but both schools have identical naplan scores. They offer similar programs (music, a swimming pool, languages). Both have very active P&C's (so watch out, there will be an abundance of chocolate drives), and both have benefited from the government's school's building program. The difference for us, is that one we can access by back streets - the other we have to cross a major road. So for us, it is a matter of geography. We are going to send Charlotte to the slightly smaller, slightly less well regarded, but so much more convenient school. I have no issues with this. I feel we have made the right choice for us, and most importantly, for Charlotte. She has already attended an open day and a "teddy bears picnic" there and is so excited herself. We bought her school uniform last week and I got a bit teary seeing her all dressed up ready for school. Now bring on next year when I have to face her first day as a schooler!