Monday, July 30, 2012

Going down

It feels like the last few weeks have been pretty tough. We saw my neurologist a week and a half ago to get the MRI result. I was really nervous about this. I wasn't expecting a bad result, but there was a part of me that was hoping to see a big change in blobby.

The good news is that the swelling has decreased significantly, although there is still some oedema present and it is still compressing some structures such as the cerebellar peduncle (don't you just love that word - "pe-duncle". Makes me giggle everytime I say it). Blobby is about the same. I expressed surprise at this but my neurologist said that he didn't expect the tumour to shrink too much. But he was happy with how much the swelling has decreased. He did think that the thumb tremor I had was due to the ongoing swelling. And he also reminded me (yet again) that the fatigue and nausea are due to the radiation and may persist for a few more months.

The next step is to go back to my oncologist for a review, and to get off the dex. The neuro said that he wants to take this slowly "given how rough a time I've had". Which I guess is doctor talk for "we don't want to screw you up again". The main problem with the dex is that it mimics the bodies production of cortisol. So if you stop taking it suddenly, your body doesn't produce enough cortisol and you can can get very sick. You can actually drop the doses down fairly quickly, until you get to 1mg, as this is the level that the body naturally produces. I am now taking 2mg, every second day, so effectively 1mg daily. And boy has it been tough. The first day when I didn't take my tablet was ok. The next day was a nightmare. I was fatigued, nauseous, I couldn't concentrate, I was emotional, and I just felt wrong. I have been up and down since then. Obviously the day I take the tablet I start to feel better, then cycle back down. Today was the first day where I've actually felt good again. Hopefully now I can stabilise before I have to drop down a dose again.

So all up I felt a bit disappointed after the last review. I was hoping that more of the swelling would have gone down. I was hoping that I could be off the dex a bit sooner (I go back in another 4 weeks to see my neuro). However I know that everything is going down, and that is a good thing.

Tuesday, July 17, 2012

Not something to write in the baby book

This past week saw some firsts for Angus - although I'm not so sure I want to put them in his baby book (not that I have been very diligent with that).

I like to think that there are some aspects of my parenting that are fairly relaxed. I believe in letting kids explore the world around them, within reason of course. Someone asked recently if I was worried about Angus now he is walking (around furniture and so on) and I responded that no, I wasn't. He needed to learn that if he walks under the table, he will bang his head. Or that if he climbs up on the (little) stool and falls, that can hurt too. And these little bumps are ok, we pick ourselves up, dust ourselves off, and try again. Of course I watch closely if he is exploring things up high. And going to our local park at the moment leaves me in conniptions. He likes to climb up the stairs, then poke his head out of one of the 3 openings, then run across to the slide where he launches himself (sometimes head first) down them. He is quick too; by the time I have tried to catch him at the bottom of the slide he has run back to the steps to do it all again.

So I really should have been prepared for his first bleeding nose. Angus had climbed up the garden stairs and was standing at the top. I usually try to stop him doing this, but today I thought I'd let him play for a minute before I went to get him. I literally was standing next to him when he did a faceplant into the garden bed. Although when I picked him up I think I got the bigger fright to see that blood! Thankfully it wasn't much, and it stopped after a few minutes.

Another first this week is not something I am relaxed or proud about. I am fairly diligent about keeping things like chemicals and medicines locked away. This week though I was a teensy bit distracted while folding washing, and walked out of the laundry knowing Angus was in there (and not shutting the baby gate). I came back in to see him chewing something - cat food I thought - but a quick check showed a mouthful of (shudder) cat litter. sigh. I had a moment where I went "should I worry about this, or just pretend it never happened". I did the responsible thing and called the poisons information line.

The lady on the other end of the phone was lovely. After confirming what brand it was (for the record Coles, and the silica one) she commented that "that wasn't one she had had in a while" and that he would be fine. Which left me thinking two things: 1. why isn't the coles brand that popular? and 2. My child is not the first to have eaten cat litter. A quick poll on facebook (because of course I had to publicly highlight my due diligence as a parent) and cat litter is by far the tamest thing other children have eaten.

So I can't find a spot in the baby book to write these milestones up. Hopefully we won't have too many more bleeding noses, but I know we will. And it is nice to know the poisons line is there, but I won't add it to speed dial just yet.

Sunday, July 15, 2012

Getting back to normal

Another fortnight has flown by. This week has seen us get back to a bit of a normal routine with the start of swimming lessons. I had to cancel last terms as the first lesson was the day I was admitted to hospital. I can't say I was very keen to go in this miserable weather. However the lessons went well once we were in the pool. Charlotte still loves it, although Angus was very hesitant to get into the water. He actually wouldn't walk in the water so we do need to go back to some basics with him which is a shame.

This week was also our 13th wedding anniversary. We ummhed and aaaahed about what to do, but decided to go out for dinner, which was just lovely. I've written before about how much James means to me, so won't bore you again. Neither of us feel the need to be showy or splashy with our relationship. I don't need trinkets or flowers as a sign of affection. But it is nice to feel so comfortable with another human being; who just gets me.

Overall it has been a very good week, and I have been feeling really very good.  Last week was another story as that dreaded gastro hit. I should feel grateful that so far I've avoided any real viruses. The dex. is an immunosuppressant and I am amazed that my immune system has actually held up quite well. You would think I would be ok with nausea and vomiting too, since I've don't so much of it in the last few months. But you would be wrong. Gastro's are pure evil. Thankfully, the kids only got a touch of it and James managed to avoid it altogether. However for a few days there I was miserable and scared that it had set me back several weeks, but then I bounced back alot quicker than thought.

Last week I also had all of my scans, and the results came back normal. I think that I will still see the breast surgeon to discuss my lumpy boob, just in case. This week I see my neurologist and I am quietly hoping for some good news. Fingers crossed!

Sunday, July 1, 2012

Magnificent month of medical mayhem

Aah, who doesn't love some alliteration. I haven't posted for a couple of weeks for no real reason. I just haven't had too much to say. Things here are going well. I've been busy just doing Mum stuff with the kids. We are filling up our days with playdough, painting, playing with blocks, baking. Just stuff.

I continue to feel better every week.  I am now off the serc completely, and am still on half a tablet of the dex. I still get very tired, however this week I've had a few days where I nearly didn't need a nap. Nearly. Or I've gone and lay down, but not actually slept. However I know the rest is good. Symptom wise I am still getting occassional headaches, and a few dizzy spells. I'm nauseaus every morning which is annoying. But generally I am feeling not too bad. I do feel frustrated with myself that at times I know my brain isn't working properly, however to everyone else I must just look normal. I'm sure that this will pass. I hope.

This week though began my magnificent month of medical mayhem. I have a medical/doctors appointment every Thursday for the rest of this month.  I had my follow up MRI on Thursday this week. It was fine, I guess I'm getting used to them now. Even the cannula, which I have a phobia about, was painless (I actually didn't know I had it in until I looked down). Unfortunately, they sent the scans to my specialist so I don't kow the results just yet. I'm not really expecting anything too drastic, just obviously hoping that the swelling has gone down.

The next day I had an appointment with my GP to discuss a few things. I alluded in my last post that there are a few things I'm worried/paranoid about. One of them is whether blobby is a hormone receptive tumour or not. My neuro seems to think that it could be, although obviously we wouldn't know without a biopsy. Given that, I'm worried about the risk of other things like breast cancer (I've read conflicting studies about the link between meningiomas and breast cancer. Some studies find no link, others say there is a 40% increased chance). Several years ago I had some lumps in my breast checked out, and was told that they were glandular tissue. Well they are still there, and now I am not happy to just leave it at that. My GP and my neuro agree. So this week I'm have a mammogram/ultrasound. And then in a few weeks I will go and see a breast surgeon to discuss the results and options. I'm not really worried about it in that I don't think they could be cancerous. However I don't want to leave it and for it to become something in a few years time.

In between those appointments is a follow up visit with my GP and then my neuro appointment. So a busy month! I feel tired just thinking about it. Maybe I need to work on some more alliteration.