Sunday, December 30, 2012

Not quite a resolution

It is the end of another year. One that I can say has been quite tough. I have found myself, like many others, wishing for a better 2013. Which really is a strange thing to do. Tomorrow the sun will come up, and another day will start, that won't be too much different to today. Just because a new calender year has begun it doesn't mean that the hurts, trials and tribulations of the previous year go away or stop being an issue.

Nevertheless, I do wish for an easier 2013. I say most years that I don't do New Years Resolutions. However, the start of a new calender year does make a convenient time to revisit goals, and make plans for the months ahead. So here are my not quite resolutions for the coming year:

  • Get off the dex: Over the last month, I have managed to drop my dex dose down to 1mg. I am really happy about this, but it has been tough. The nausea, fatigue and dizzy spells have been very taxing. But I managed, and at a time when we have been particularly busy too. The dex has been a bit of a mental crutch for me (I feel that without it my brain will swell, that I can't cope and so on) but now that I feel more stable I need to do without it. The side effects are terrible. I feel like the old woman who swallowed a fly in that I am taking medication after medication to combat the side effects. Also I need to discover what I am like without the dex as I don't know what my symptoms are following the radiation. In the first week of January I will drop down another dose, with the hope that I will be completely off it by the end of February. 
  • Lose some weight: 10 kg to be specific. Which is alot. I have been blaming the dex for this weight gain, and it has played a large part. However I can't blame the dex for what I put in my mouth. I've still been managing to go to the gym once or twice a week so I need to increase that slightly. Strangely, I am having urges to start running. In the past I have only ever run to catch transport, or to chase children. However last week I hopped onto the treadmill and spent 5 minutes running (ok, ambulating along at a slightly higher speed than walking is a more accurate description) and I felt ok. Until I stopped, then blobby went a bit spacko and let me know he didn't like it. So I might not do the treadmill again, but I might consider going for a jog. I think I like that I can set a clear goal (eg. run 5km) and work towards that. Irrespective, I need to focus on eating healthy and moving more. 
  • Go back to work: I have been talking about this for such a long time. Being an OT is so important to me, it is part of my identity. As much as I have enjoyed not being at work, I need that mental stimulation as well as that sense of satisfaction that being part of the workforce gives one. Not to mention the finances desperately need a boost! However returning to work scares me. I don't want to do it until I am off the dex. And I am still so tired at the moment that I worry I wouldn't cope. And then there is the daunting part of actually finding a new job. But I hope that by March I will be medication free, feeling stronger, and looking for work.
  • Be more present for friends: I feel that I have let a lot of our friends down this year. I have spent so long worrying about myself that I haven't been there for others. And for this I am sorry. So next year there will be more playdates, more catchups and messages sent!
Of course there are many more things I wish for 2013. I hope that my children continue to stay healthy, and happy. That Charlotte continues to do well at kindy (she officially starts this year). That our friends and family know happiness and good health. But these aren't resolutions, just things I always hope for.

So whatever may have happened in 2012, I hope that you can look forward to what may come in the New Year!

Monday, December 3, 2012

Best not to taunt the universe

I haven't posted for quite a while, for a number of reasons. One is I've been giving my brain a bit of a break and a rest from some things (like thinking), another is that we have been so busy. So time for a catch up.

About 3 weeks ago James went overseas for business. I actually coped quite well on my own. I managed without a nap, the kids got fed, the house stayed clean. I even managed to dispose of a dead fruitbat I discovered in our garden and no less than 3 spiders! The saturday before James came home I was feeling pretty exhausted. That day began a series of storm cells that rolled across Queensland. I was quite anxious about these as we have a large gumtree next to our house and I am just terrified it will fall down in a storm. I survived that night (thanks to a friend who chatted to me online just about stuff, she kept me from losing it entirely!) and so I may have posted a status on facebook along the lines of "Come on universe, what else can you throw at me?!". Perhaps I should not have taunted the universe so boldly.

Sunday morning arrived and another storm rolled through, but it was all ok as James came home not long afterwards. That evening we were preparing a yummy dinner of homemade pizza (I've probably said it before but James really makes the best homemade pizza's) and I was watching the weather radar. A severe thunderstorm was coming directly towards us, but we didn't expect too much. Maybe some wind, and a bit of rain. I went up to close the windows upstairs and stood at our back window to watch for a few minutes. I heard a roar like a train, and realised that that was the storm coming. After another few seconds of watching, a few choice expletives were issued, and I grabbed the kids and ran downstairs. The hail hit a few seconds later but I was huddling with the kids in our front entrance way (I had thoughts of standing under doorways, away from windows etc). Which was a good thing as a few seconds later our skylights broke. Glass, hail, rain and debris started flying around. To say I was terrified was an understatement. Within 15 minutes it was all over although it felt like so much longer.

We popped outside to see the damage, as did all the neighbours. Our wonderful neighbours across the road called out if we were ok, which we weren't really, so they came over to help. Sadly I have to admit being in a bit of shock, but they were wonderful. They looked after the kids while James and I cleaned up the glass and water. We had debris everywhere. all over the kitchen bench (and sadly dinner. Pizza which you have to pull glass out of is not much fun), and I was worried about water damage as we had water everywhere.

Thankfully the rain stopped that night, as we were left with huge gaping holes in our roof. Even though we called the SES immediately (such a wonderful organisation) they didn't arrive until 11pm the next day to tarp our roof. Unfortunately they couldn't remove the remaining shards of glass so we had to get the insurers "make safe" team to do that the next day. That was an incredibly stressful time, knowing that shards of glass were dangling above our heads.

In terms of other damage, it was extensive. Roof tiles cracked, pergola roof damaged, rainwater pipes shattered, gutters bent out of shape, air conditioning units shattered, bathroom window broken. And then there were all of the kids toys outside as well as so many little things like my pegs and peg bucket. Not to mention the damage inside the house as water flooded the kitchen and a lightning strike just up the road shorted out a few things. It was almost like someone had taken a machine gun and peppered the house. The garden was a sight, and all up and down the street the damage was the same. We were lucky in that only one window had broken - many houses in our street have had several windows broken. And yet, one street back, there are houses with no damage at all. All of our damage was caused by hail and rain. Our big imposing gum tree is still standing. We didn't even lose one branch!

Two weeks on and I have no idea when all this will be repaired. We finally had the bathroom window fixed today. We have had two insurance assessors already as the damage is so extensive. In the meantime, I dread any the onset of more rain on our tarped roof. And without proper insulation the house is so hot. We finally turned on the ducted air conditioning yesterday as we couldn't stand the heat (it was nearly 30 degrees inside the kitchen) and so far it hasn't exploded! I know we aren't alone in having to deal with this, but I do wish that we didn't have to. I am constantly looking at the house wondering if there is more damage we have missed. I am grateful for insurance, and so far, they have been good (we have had the contents approved which is good, we can now replace the kids toys and things like the toaster which got water all through it).

I do however promise to not taunt the universe again. I'm not saying that you win mind you, but let's just call a bit of a truce.

The storm in progress

We really shouldn't be able to see the sky

The aftermath out the front. Hail and shredded plants

Skylights tarped but still rather unsafe

Friday, November 9, 2012

Happy tumerversary to me!

Today is one year to the day that I had my MRI. One year ago today my whole life changed. When I think back to that day when I had my scan, and the days that followed it, it is all such a blur. However once I had the actual diagnosis I remember feeling just a sense of calm. I was sure that I would have surgery by Christmas. That I would be fully recovered after 6 months with maybe some small deficits. Boy was I wrong!

So how are things one year on? Physically, it has taken quite a toll. I still get so fatigued, the dizziness is always present, and the nausea is awful (although I am taking a new anti-nausea drug which is helping). My brain gets so tired that I find it hard to read and think. I have nerve damage in my face (to my trigeminal nerve). My hand shakes when I get too tired. I've put on weight. My hair is thinner where the radiation was. I'm still on 2mg of dexmethasone, and now I'm taking antacids, calcium, and vit D tablets to counteract the effect it is having on my body. But...blobby has not grown in a year. The swelling in my brain from the radiation is decreasing.

When I think back to where I was before the diagnosis I am worse off, but not really by that much (and in different ways). I can't actually believe how long I struggled through, taking care of the kids, and running around being a Mum. Because I was dizzy, nauseous, and oh so fatigued then, I just didn't know why. I have some vivid memories of coming home from Mother's group in tears because it was so exhausting; I felt like a failure that all the other Mum's could cope and I couldn't. At least now I have a reason, although I feel immense guilt that I am not the mother I wanted to be.

Emotionally I am still struggling with my sense of guilt. I have guilt about everything - my need to have a nap, my lack of housework, the fact that I have to be sick at all (and the impact it's had on our family). And also with that a bit of anger. Not really a "why me" type anger, I don't see the point in that. For whatever reason I got dealt this diagnosis, so I just have to live it. But I get angry at how much money we have had to spend on treatment, and daycare, and medical bills. And then I get angry at thinking about all the things we are missing out on (like holidays, and shiny electronic gadgets, and nice couches that don't smell of pee and vomit).

So what else has happened in a year? The kids have grown up. Angus has turned from a little baby into a toddler. Just today he used the word "me" to refer to himself. He is a delight to watch. Charlotte too has changed - she is hardly a toddler now and is entering the world of "little girls". Just recently she has become obsessed with princesses, and jewellery, and has become aware of clothes. It is a remarkable change to watch. Of course they are both doing things like asserting their independence, and we have some interesting (challenging, infuriating) behaviours, but I love them so much. Both are doing well at daycare (they are still in two days per week). Both are growing, and healthy, and thriving. So maybe I am doing something right.

I do love this time of year though. Because we now have the chance to look forward to what is to come. And that is exciting. Soon it will be Christmas, and then Charlotte's birthday, and then the New Year. Obviously I need to keep getting stronger. But I am still hopeful I can return to work next year (yes I know, I need to pace myself on that one). Charlotte will officially start kindy (she has been in the kindy room at daycare for quite a while and is loving it). Angus has quite a few big changes to come (toilet training, eeek, a big boy bed). James will be doing a bit of travelling for work with conferences and so on. We are planning a nice tropical holiday. Life goes on.  Unfortunately blobby will be along for the ride so we had better start getting along a bit better!

Tonight we are going to have a lovely bottle of champagne and have a toast: To surviving one whole year with a brain tumour, and may there be many more to come. Happy tumerversary to me!

Monday, October 15, 2012

Lowering my expectations

It has been a busy few weeks filled with lots of things. Mum and Dad came down for a few days, James and I went to a dear friends wedding (and had a luxurious night out at a hotel in the city), James did his 100km (and a bit more) bike ride, the kids went back to swimming, just general life stuff.

And the last few weeks have been tough. Really tough. And then good for a few days, and then tough again. I have been doing an awful lot of thinking about where I am at now, and have realised that I need to lower my expectations. I tried going to the gym 4 days a week, and was shattered. We have gone out to social events and I feel fine there, until I come home and my brain shuts down and I need to sleep. I still can't hold a normal conversation with people - I ramble, it takes me longer to process what was said just a few seconds ago, I forget words, it is hard work.

I have realised that I am about 75-80% back to "normal" and that I am simply not improving. I have plateaued. However I don't know if I am ever going to get better. The trouble is I simply don't know what to expect. I did quite a bit of research leading up to my treatment, and about the dex and so on, but not what to expect 9 months later. I simply expected that I would be living life as normal. And I am far from that. So I have begun to look for people's stories and experiences and research (limited as it is) etc that can give me some guidance. What I have learnt is that everyone's brain tumour journey is different. Some people have surgery and bounce back straight away, others, like me, are still struggling months on. And I have finally learnt to shed the stigma I've attached to the word "benign" as my disease progress now is pretty similar to any other type of tumour (except I don't need chemo).

So I have lowered my expectations. I am still going to the gym 3 days a week which I am enjoying. After talking with James I have to accept that returning to work anytime soon just isn't going to happen. I am learning to like the dex. From what I have read, it appears that my type of tumour can swell on and off quite a bit so trying to manage that is going to be an ongoing thing. Today I increased my dosage again as I have had a terrible few days (I nearly went up to the hospital yesterday as something just felt wrong, I was as nauseous and dizzy as just before I was last admitted, but today I feel good). I have a lot to discuss with my neuro when I see him next about how we manage this. And I've accepted that I need help to work through these emotions so I have scheduled a session with a counsellor at the Cancer Council (they offer free sessions).

It has been quite an emotional few days coming to this point. I am still being optimistic, I know I am so much better than I was a few months ago. But hitting this plateau is very frustrating. It doesn't help that I am coming up to my next MRI (next week) and this is playing on my mind.

In the meantime, I am continuing to fill up our days with life stuff. Cleaning, baking, swimming lessons, birthday parties, kids getting sick, doing projects around the house, just life stuff.

Saturday, October 6, 2012

The dreaded D word

I have been consumed lately with the dreaded D word. No, not Dexamethasone, but There I said it. I can't stop thinking about my diet, and dieting.

I've said before that I don't believe in diets. I believe that you either eat healthy, or you don't. And if you don't, then you are likely to put on weight. I can't really think of a time where I have ever been on a strict diet. Of course I have had times where I've watched what I ate, and a short time where I saw a naturopath for my diminishing energy levels where I started going gluten free for a while, but never a strict diet.

However I have to admit that I am not the slimmest of people, and I am a good 10kg overweight. I can make many excuses for that. I am a comfort eater, so when I get stressed I like nothing more than to sit on the couch with a big bowl of pasta, and a few glasses of wine. I have had many reasons to feel stressed over the years, and probably haven't learnt good coping skills. Of course the IVF and pregnancy all played a part in my fluctuating weight. I have also realised recently that I am a comfort baker. When I am tired, or stressed, I bake. This may not make sense to people, but I find it relaxing and a lot easier than trying to focus on something. Unfortunately, once you bake something, it is there to be eaten.

After I was diagnosed though I became much more aware of being healthy. Of course that began with going to the gym regularly. My motivation for that was purely to increase my strength and stamina. I was using the calories burnt on the equipment (I only did the crosstrainer and the exercise bike) as a guide for how well I had done that day, not necessarily because I wanted to lose weight. Nevertheless, becoming aware of the effort involved in exercise does change the way you eat. I remember coming home after burning off 250 calories thinking I had done so well. As a "treat" I thought I would grab a tim tam and checked the nutritional info on the packet. One biscuit is 100 calories. ONE biscuit. Two would completely undo any good I had done.

It has taken quite some time for my head to catch up with my desire to lose weight. I put on over 5kg while I was in hospital, partly from the dex, partly from that box of chocolates that I couldn't stop eating. I know that the dex makes me put on weight (it increases my appetite and makes me store fat) however I can't blame it completely. I did eat a lot of cake when I got home. And a glass or two of wine with dinner became more than an occassional habit. I have become quite down about my appearance. My face is a bit swollen I can tell, but I have a double chin now. And a pudgy belly that makes people think I'm pregnant. It is demoralising. But I want to change that.

Over the last few weeks I started to track my calorie intake for the day. And that is eye opening as well. It is very surprising how many calories are in simple things like cheese and pasta. For some time now, James and I have been aware of our portion sizes, and counting calories has confirmed what I thought - our general diet with meals is very healthy. However - the snacks I have throughout the day add up. Combined with doing things like finishing off the kids breakfasts, lunches etc, mean I was consuming quite a high calorie load.

So, these last few weeks I have been setting myself many little goals. To try and get to the gym 3 times per week (I was aiming for 4 but that was too much for me). I am doing a resistance program now which I'm enjoying. I also am trying to cut down on wheat products (not cutting out carbs, I don't believe in eliminating one thing from your diet, but there are a scarily high number of calories in carbohydrates so I can see why people cut it out) so that means more salads. We've cut down on the wine drastically (also a good thing for my health, blobby doesn't actually like wine I've learnt) and have cut out takeaways (mainly due to our tight budget but also for our health). I'm still struggling to reduce my baking as I just love to do it, but I am much more aware now of what goes into a recipe, and I can work out how many calories are in just one slice of that cake!

I don't really know if this will shift the weight. I may have to wait until I'm off the dex to really see any changes. But I know that I'm taking a step in the right direction. My overall goal is to be as healthy as I can be. Yes, life is too short to not eat that cake, but if you have too much cake, unfortunately, that cake will shorten your life.

Monday, October 1, 2012


Time is a fickle creature. It takes on many guises.

Time passes slowly when you are waiting. Waiting in a doctors rooms for those results, waiting for a baby to arrive, waiting for news. Time drags when you haven't had enough sleep, the house is a mess, the children are fighting, and all you want is a coffee.

And yet time goes so fast when you don't want it to. When happy giggles, or the delightful ramblings of a toddler playing with her toys fill the air. When the afternoon is filled with friends, and wine, and laughter. Or there is blissful silence. Time passes quickly without you realising. When tiny clothes no longer fit. When words tumble out of little mouths filled with tiny teeth and not a gummy smile. When you realise a baby has become a toddler.

And time can seem to stand still, although this too is but an illusion. At 3am, when you are feeding a baby who is now peaceful; watching the dim light reflect off their eyelashes and rest on their cheek. Those are moments when you never want time to move on. Or when you are holding a sick child, feeling their hot skin sear into you. You would do anything at that point to make time move quickly, to take away their pain.

Time lets us be optimistic. We look forward to the time when the children sleep through; are more independent; when the tantrums stop. We look forward to holiday time and Christmas time. We look forward to a different time, where life is easier, and the worries of today seem less important.

We look forward to the first time - the first step, the first word, the first smile and wave. We look forward to the last time - the last nappy, the  last swimming lesson, the last tantrum. Sometimes we don't even know some of these things have happened until it is too late.

Yet time can be cruel. The image that is reflected in the mirror has been changed by time. Older, more wrinkled, saggier. Different. Time makes you reflect. To look back and wish for things that could have been. And yet in reflection, one can see improvements. With time comes wisdom. The realisation that whatever has happened in the past, has allowed the development of new paths, new journeys.

Time allows healing. Bones knit, muscles repair themselves, tissues heal. Health returns. Hearts stop aching. With time, memories become blurry. Pain fades, although never truly disappears.

We waste time; we pass time; take it one day at a time; we never have enough. We run out of time. We can never truly stop time. We need time to keep moving, to keep going, to keep on living. What we should do is take each moment of time for what it is - a second, a minute, an hour, a tick of a clock, a sigh, a breath. Take these moments and do whatever they ask us to do, but be aware that soon that moment will pass. Time will move on, and so shall we.

Monday, September 24, 2012

Blobby on the road trip

I thought I would write a separate post about how I, and blobby fared on the holiday. I wrote before we left how I was feeling very anxious about this. Overall, I did better than I thought.

The drive down was ok. I found that I was very nauseous every day. And when we stopped the car, blobby thought we were still moving so I had some terrible dizziness, but this did settle down after a few minutes. I found I got very tired after our few days out and about in Sydney, so we made the decision to pull back a bit on activities, and mainly on catching up with people (so my sincere apologies to anyone who wanted to see us and didn't). The lack of sleep was starting to knock me a bit, so having a quiet day once we got to Canberra was absolutely necessary. Even with this, by the time we had done the National Museum, I was done. I really couldn't have done too much more.

However it wasn't until the drive home that I really hit the wall. That day of driving was a bit too much. By the time we had made it to our hotel I was shattered. It is hard to describe, but my brain just shuts down. I can't think, or do basic things. It isn't a nice feeling.

Unfortunately, once we got home, I didn't quite have the chance to rest. The following day was a swimming day, and I had a billion loads of washing to do. The kids seemed a bit unsettled and both had been up during the night. By the Thursday I was really struggling; to the point where I nearly called up my neurologist to ask to be admitted. I was so nauseous, I felt like I wasn't coping.  James had to remind me that even though I felt bad, I was nowhere near as bad as at any time in the past.

Thankfully the kids went off to daycare on Thursday and I pretty much spent the whole day in bed. Friday was better, and by the following Monday I was feeling nearly "normal". (well as normal as I ever feel).

I am glad that I had increased my dex before we went. I don't think I would have made it through the week without that. Unfortunately it has now given me some insomnia (I probably had that a bit while we were away but was so tired from doing things that it balanced out. But now I am rested again it is kicking in) which is frustrating as it makes me even more fatigued during the day. 

So generally I was pleased with how well I coped. I have to remind myself that I can do these things without falling into a heap. Yes I do have to factor in more rest time, but I don't have to be afraid of what blobby is going to do to me. So we now have to get back into a normal routine. I have started a resistance progam at the gym and am now going 4 days a week so hopefully that will help with my energy levels as well.

Sunday, September 23, 2012

Our big trip away - part two

There has been some suggestion after my last post that the car trip with the kids didn't sound that bad. I did miss adding in Angus' contributions. He had his blankie with him. Which he would drop. WEEAAAHGH. I'd turn around and pick it up. WEEAAAHGH sigh. Pick it up. WEEEEEAAEEAHGH. Grrrr. Eventually we tied it to him so he couldn't drop it. WEEAAAHGH. hmmmm someone thinks this is a game.

We had left Sydney a bit later than we thought, and had made sure Charlotte went to the toilet before we left. An hour later "Muuuum! I need to go wee wee. I'm going to explode!". I can tell you that an hour out of Sydney there are no public toilets. No truck stops. No pullovers. We found an emergency stopping zone which I can assure you, did not feel safe. Luckily we had packed a potty with us (thanks to one of my Mum friends for that recommendation, certainly a lifesaver). Put her on it "I've run out of wee". Grrrrrr.

We finally made it to my sisters house just outside of Canberra and had gorgeous baby snuggles with baby J. She is just so divine, and tiny, and snuggly and gorgeous. It was lovely to be able to spend time with my sister and her family. We had a lovely dinner out at their local pub and an early night. We were pretty tired at this point. Sharing a room with both kids does not make for a good nights sleep, on top of how busy we had been. So the next day we had a quiet day hanging around home, with some more snuggles. We did manage a trip to a local cellar door for afternoon tea (and some wine tasting, yummo. I can't remember the last time we did wine tasting).

Our next day we went to Questacon. This is a huge must for anyone visiting Canberra. I wasn't sure how much Charlotte would get it, but she loved every bit of it. It helps that there are so many exhibits that are hands on. She could push buttons, pull levers, play with things. There was even a robot! Questacon also has an area called mini-q which is set up for under sixes. There is a water play table (although the smocks provided aren't quite waterproof) which Angus LOVED. There was a climbing frame, and these fabulous role play areas (a space ship, bakery, garage, vets, construction site). Both kids had a ball here. James also had a great time, going on the free fall slide. Sometimes it was hard to tell who was the kid...

The next day we went to visit the National Museum. To be honest, I was a little disappointed with this. The exhibits didn't feel cohesive, or with a clear direction. And what I thought would have been important (such as personal items of Captain Cook) were tucked away in a corner. At one point, we let Angus out of the stroller to run around. I guess we were both quite tired. I thought James was watching him, he thought I was. Next thing I hear a whoop, whoop, whoop sound. Hmmm, that sounds like someone could be climbing on an exhibit. ANGUS NOOOO! He decided he wanted to get a good look at the Model T Ford. oooops. Time to go, so we headed up to Black mountain for some more afternoon tea instead. Charlotte found the concept of a black mountain with green trees very fascinating.

Our last day in Canberra my sister looked after the kids and we had a lovely lunch out. James then went off with my sister to see a concert while I looked after the kids (Uncle C, not the Sydney Uncle C, the other Uncle C) had been called out to a fire (he is in the CFA, but it was very exciting to see a real fireman in his uniform!). It was time to pack up and head home, very tired, but with lots of sightseeing achieved! And it was so wonderful to see my brother and sister, nephew and of course, baby J!

Our drive home was a lot better than the way down. However we made a bit of an error in judgment by trying to make it to Tamworth (from Canberra). We made it, but that last hour was a real stretch. The kids were actually quite good. We finally found a DVD that kept them both happy (Play school) and we worked out that plying them with muesli bars kept their hunger at bay. Angus did have a poo explosion, but thankfully Charlotte didn't have an accident at all the entire week. We finally arrived home (and yes Charlie was still there, happy as a cat can be). I am glad we did it, and made the effort to do lots of activities, but also happy to not go away for a little while.

Saturday, September 22, 2012

Happy 18 months Angus!

Angus is 18 months old today. I can't believe how fast that has gone. He is turning into a little man right before our eyes. I have been trying to hold onto my "baby" but I think I have to accept that he is now a toddler.

The last few months have seen quite a few changes in him. Sadly, I think of his development as before I went into hospital and after, as really there was a whole month where I hardly saw him. Of course there were some big things at that time - he stopped breastfeeding, and James managed to get him to sleep through (well some nights, he still doesn't sleep through every night, maybe one in 3).

During that time he also became attached to his blanket (or "blankie"). This has irritated me no end as it is an entire blanket, that he insists on carrying around (think Linus from Snoopy). Don't get me wrong, I have no issue with children getting attached to toys (Charlotte still has her elephant that she's had since birth). We have supplied him with no end of adorable stuffed toys, some of which he likes, but none are as precious as that blankie.

He also became more independent with his eating. Which is great. Now we just have to give him a bowl and a spoon and fork and he feeds himself. It can get a bit messy. For a while there we could tandem feed (we would both have a spoon and I could alternate mouthfuls) but now if I even approach him with a spoon it causes a bit of a tantrum. He is a tiny bit fussy with foods although pasta and carrots are his favourite. I think he picks up on what Charlotte will and won't eat and reacts accordingly. He certainly copies everything else she does!

Angus is definitely acting like a little boy. His favourite toy is a truck although he will happily play in the toy kitchen for ages on end. However he LOVES being outside. I am so grateful the weather is warming up as he never wants to come inside. And if there is water to play with, well.... Angus is also a bit of a climber, and a jumper. I caught him yesterday climbing up onto the ottoman, and then leaping from that onto the couch. Which sounds ok, except the couch was probably about 2 feet away. He did make it though, just, rolled off, giggled, and did it again. We are starting to see more and more of this mischievous side of him coming out.

One area of his development that I have been concerned with is his language. I know, all boys are slow, but I wouldn't be able to call myself a good OT if I wasn't worried about meeting milestones. Up until recently he really didn't have any words at all. And what words he did have actually disappeared (he went from calling us Mama and Dada to just being Mama). However I am delighted that since our holiday his vocabulary has increased dramatically. We are now getting a word every day which is great. I still think he is behind, and I will still keep an eye on it, but I am reassured that we are heading in the right direction.

I certainly have no worries about his comprehension. He understands everything we tell him and can easily follow directions. He is at that very sweet stage where he wants to help out with things. So he puts the cutlery from the dishwasher away, helps feed the cat, puts clothes in the basket etc. I do love this stage of development. Apart from the whingy, clingy behaviour that is. But then I also like getting cuddles.

When Charlotte was this age I had terrible morning sickness, and I know I felt bad that I couldn't really enjoy her. I am determined to treasure every moment of this wonderful age with Angus.

Playing in the TV cabinet, as you do

Playing at the beach. He was a bit scared of the waves but loved the sand

My adorable Angus

Wednesday, September 19, 2012

Our big trip away - part one

We got back from our big trip away last week and it was fun. I say that in a "oh my god why oh why did we think travelling with two small children was a good idea" way. I realised that you just have to change your expectation of what travelling with children means. For them it is all about new experiences. For us it is about bundling those experiences into small, manageable, bites that don't leave all of us exhausted and cranky.

The drive down probably didn't start well. Less than 5 minutes after leaving Charlotte asked "who is going to look after Charlie (the cat)". We replied that her uncle was going to house sit for us. Suddenly it began "I missss Charlie, I want to seeeee Charlie, I waaaannnt to go hoooome". We tried to distract her with the thought that we would be visiting our new niece, baby J. Which worked "I want to see baaabbbby JJJJJ, I want to seee herrrrr nooooowwww, this is boooring, driving is boooorrrriiiing". sigh.

I was quite paranoid about Charlotte's toiletting on this trip. She can sometimes leave it a bit late so I thought I would ask her frequently if she needed to go. No she would say. 10 minutes later "I got wee wee coming!". So we did schedule frequent stops, and often where there was a playground. Playgrounds became our favourite thing to find. "But I want to stop at a plaaaaaayground". sigh.

After lunch on the first day we plugged in our new toy - a dual dvd player. James and I have previously eschewed technology like this but have since decided that if it is there, we should embrace it. We also stupidly gave Charlotte the remote. The conversation went like this: "I've dropped the remote, where is the remote, it's not working, I dropped the headphones, Muum Angus has the remote, Mum Angus has the headphone wrapped around his neck, Muuuuuum Anugs is pulling on the cords". sigh.

With relief we arrived at our hotel which was so exciting. There was a BED just for Charlotte, and in the same room as Mum and Dad!! I cannot stress how exciting this was for her. Unfortunately it meant getting both of them to sleep was a challenge and eventually we just had to turn all the lights off (at 8.30pm) and go to sleep ourselves.

The second day of driving brought more loo breaks (and the chance to pat some horses), more playgrounds, more dropped remotes. It took us a lot longer than we thought to drive just a few hundred kilometres. However we finally arrived in Sydney and to Uncle C and K's house (and another playground). We had a yummy dinner out at a local restaurant (although a tip - if they don't have a highchair, it probably isn't going to be a great experience. My apologies to the other diners).

The next day was a typical Sydney day with glorious weather so we headed off to the train station and to Circular Quay. The kids loved this (not having been on many trains before) and there were just so many things to look at. Trains, boats, planes. The fact that we were also looking at one of the most beautiful harbours in the world was lost on them, but we appreciated it. A fun ferry ride later and we were in Manly. The weather was a bit nippy, and we had no intention of swimming. May I suggest that it is a mistake to take a toddler to the beach if you don't want her to get in the water? We may have had a bit of a tantrum at the beach. But fish-n-nuggets (what Charlotte calls fish and chips) was enjoyed by all (well except me, I don't eat fish) followed by an ice-cream.

Day two and we met up with a good friend and her daughter at the Sydney Aquarium. Again this was so much fun for the kids. There were fish everywhere! The kids just wanted to run from one exhibit to another. After some lunch we went to the water playground at Darling Harbour. I strongly recommend this for anyone going to Sydney. It was fabulous, with water bubblers, and rivers flowing. We just stripped the kids off and let them play for well over an hour. It was hard to get them away!

The next day we packed up, feeling very tired, to head off to Canberra and to finally see baby J!

Thursday, August 30, 2012

A little setback

I saw my neurologist today for my monthly review, and he was a little bit concerned with me. This hasn't been a good month - I've had several bad days, the nausea has been persistent if not increasing, and the dizziness is still present. On examination today I also had some nystagmus and my thumb tremor (although that is now coming and going). He believes all of this is still related to the swelling, and that it is likely the swelling has increased again. So he wants me to increase my dexamethasone dose, up to 2mg a day. My neuro didn't really offer a reason for the increase in swelling, but that it can happen, and we just need to take our time with lowering the dex dose. (I've actually read on Dr Google that the swelling can come and go for no real reason).

But my neuro remains optimistic that I will get back to "normal". I mentioned to him that I was thinking about going back to work but he actually advised me not to until at least the start of the new year (obviously depending how I feel then). I was hoping to be able to start earning some money again! He thinks I will still be on the dex until early next year. So he wants me to have another MRI within the next two months. I also need to have a bone scan, just to check for signs of osteoporosis since it can be a side effect of the dex. I've also got a script for an antacid to combat another side of the dex, crippling heartburn. Stupid (lifesaving) dex.

One other thing that my neuro confirmed today is that losing weight on the dex is a near impossibility. Due to it's impact on the cortisol levels, I put weight on around my trunk, face etc. And it doesn't want to go anywhere. I've been a bit focussed on my weight these past few weeks as I don't like what I see in the mirror. I guess I have to learn to just be grateful with what I see staring back, as at least I can still see!

I'm quite disappointed at all of this, but also a bit relieved. I have been struggling these last few weeks and I'm over feeling nauseous. So increasing the dose will hopefully help with that. However, to have a setback is a bit of a downer, and unfortunately makes me a bit anxious that I might get even worse. I just have to remind myself that even on my bad days, I am so much better than what I was 4 months ago. I might just cheer myself up by thinking about Unicorns. Ones that poop rainbows. Yes they do exist.

Unicorns pooping rainbows

Monday, August 27, 2012

A simple task

No-one ever likes housework, but once upon a time it used to be a simple task. Get in, clean bathrooms/vacuum/make beds, all done.

Now it goes something like this:

Me: Lets go and change the sheets
Children: Yay! (all run upstairs)
Charlotte: Can I jump on the bed?
Me: No, get off so I can take the sheets off
Charlotte: here I'll help (pulls everything off and dumps it on the floor so that I then have to sort through it)
Me: Where's Angus?
Charlotte: I'll go find him. (scream). Found him
Me: Don't squash your brother (runs up the hallway, separates children, goes back to room).
Me: Lets find some clean sheets (rummages through cupboard, silently curses my lack of organisation of linen cupboard. Vows to do better but know it won't happen anytime soon.)
Charlotte: Mum!!
Me: What
Charlotte: MUM! (Door slams)
Me: Where's Angus? (run up to the bedroom, remove Angus from en suite bathroom, return to bedroom). Let's put the sheets on the bed
Charlotte: I'll help. (Jumps on the bed).
Me: Charlotte please get off so I can make the bed. Where's Angus (I shake out the sheet: THUD; Scream) Ooops, there you are Angus. Sorry.
Charlotte: (runs off). Mum! Angus
Me: What? (goes to investigate. Find Angus with his hands in the sudocream pot, and with cream all over him.) Sigh. (clean up Angus; must remember to shut all bedroom doors).
Me: OK, lets finish. (places all pillows back on the bed. Charlotte jumps on bed and throws them off.)
Me: Time for a cuppa and then the vacuuming (sigh).
Charlotte: Yay! (sigh).

Tuesday, August 14, 2012

Our house

Our house is on a nice street, in a nice suburb. There are nice trees around it, and some nice parks. We can walk to our local shops which have nice people in it and the local schools are nice. Our neighbours are - mostly - nice. I can't see us moving from our house for a long, long time.

Yet I wish there were a few things I could change about our house. We have been here for 5 years now. I remember when we moved in we had so many plans. I even wrote them down. We had some short term plans (things to finish off within 12 months), some 5 year plans, and one or two bigger things that could wait a bit longer.

Well....I threw the list out a while ago. We had only crossed off one or two things. Unfortunately, we had some unexpected expenses (called Charlotte, Angus and blobby!) which put a dent in our renovation plans. We did spend the first year fixing up a lot of things that you never think of when you buy somewhere (we installed new guttering, resurfaced the roof, and fixed up some dodgy electrical work). And there were a few big things that we did manage to do. After the first summer here with temperatures in the upstairs bedrooms reaching 32 degrees, we installed ducted airconditioning. And of course we managed to renovate James home office. So I really should feel happy with what we've achieved.

But....I want a new kitchen. And a new bathroom (the shower screen is held together with duct tape). I have some grand plans to renovate the laundry, and I would love an outdoor kitchen (with some new paving too). I might need to make a new list. In the meantime, I am doing some renovation ogling, and a little bit of dreaming. Hopefully nothing else happens in the next five years to derail our plans!
Not my kitchen, but wouldn't it be nice!

What dreams do you have for your house?

Sunday, August 12, 2012

Blobby: 1 Me: 0

Today blobby got the better of me. It's been a while since that has happened so I really shouldn't be too upset. However today I had a little cry about it all.

Last night I went out, to meet some lovely people, and had a nice dinner. This was the first night I have had out by myself in....a very long time and it was nice. The food was great, the companions great. But I felt like a bit of a fool. Because my words don't work. I had to work so hard to try and speak clearly. Many a time I simply couldn't get the words out, even though they were at the tip of my tongue. I know what I want to say but I have to stop and think. Not only that, but paying attention to the conversation in a busy restaurant was very challenging. Either I couldn't hear properly, or the room was a bit spinny, or I had a bit of delay to process what was said. This was probably the first time I've been in a situation like this, and I truly wasn't prepared for how hard it all was.

Of course it was a late night, and there is a reason why parents don't go out very often. Angus was stirring when I got home (around 11.30) so it took me a while to get to sleep. Then Charlotte was up at 2 needing something or other. Then Angus woke up for the day at 5.30 am.

And sometime during the night I woke with an excruciating pain in my ear. Just like when I started to get sick. In the morning, apart from feeling shattered, and nauseous, I also had a blobby ache. Both the ear pain and the blobby ache have been resistant to pain relief although after some therapeutic baking and an afternoon nap I felt less sick.

So today I am a teensy bit paranoid that I have overdone it, and that I am on the edge of having a massive vertigo attack. Or that it means the swelling has gotten worse. I hope that it just means I am simply tired and a good nights sleep will sort things out. But to say that I am frustrated, and angry with blobby, is an understatement.

On that note I had better head off to bed and hope for a better day tomorrow. I have promised Charlotte that we will make a collage picture and I need to have my wits about me if I am to supervise her and Angus doing that!

Tuesday, August 7, 2012

6 months on and moving on.

It has been 6 months since blobby was zapped. To say it has gone by in a blur is an understatement. I am revelling in every day that is slightly better than the one before. I am still having bad days, and I am far from "normal", but when I think back to how I was 6 months ago,  I am so much better.

However it is time to start thinking about the future. We've already started getting back to a normal routine with swimming which is great. After the diagnosis I really went into hibernation mode. A lot of the time I felt too sick to make plans, or I was too anxious to organise something in case I then didn't feel up to it. We have hibernated for the last few months, almost deliberately avoiding people. But now I feel able to make plans, and just see how it works out. I'm sure there will still be bad days where I am not up to doing anything, but they are getting fewer and fewer.

I have even made some plans for weeks ahead. Something I haven't done for a long time. A dear friend is getting married in September and James and I have booked a night at the hotel where the wedding will be. Eeek. Scary. Not only have I committed to something weeks in advance, but James and I will have our first ever night away from the kids (not counting hospital stays).

And we are planning a bit of a trip to visit our new niece and catch up with family and friends. That will be a big test for me. If I can cope with that, then I will start to think about returning to work. The thought of that is actually quite exciting, so some big decisions to be made in the coming months. I obviously have to be well enough - there is no point in exhausting myself just so that I can return to work. I always get a bit surprised at the things I can't do. For instance, today was a good, but busy day and now I am tired. I am strugging to write this, so please forgive my poor grammar and blurbiness. And that is annoying; to realise that I'm not 100% yet.

But in the meantime, if anyone is up for a playdate, I will book you in!

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.

Sunday, June 17, 2012

Two months on

This day, two months ago, I was lying in a hospital bed on a drip listening to my roommate snore away. I was convinced that by morning I would be feeling great and would go home. Wow. I can honestly say that I've come along way since then.

It has been another up and down week, thanks largely to my overzealous activities last weekend. By Monday afternoon I was shattered, and slept all afternoon. This is still a problem I am having while I'm in this "in between" stage (I like that term; not yet better, still a little bit unwell). I know I need to get back to doing normal things, but pacing myself and setting realistic limitations is difficult.

Wednesday was going to be a big day no matter what, as we went to see my neurologist. He is happy with my progress, particularly given how far I've come. I still had a slight nystagmus, and the ataxia is there, but my reflexes had improved. He is still optimistic of a good recovery. He remarked that some of the symptoms may be from withdrawing the medications. So he wants me to stay on the dex until I see him again (in another month) and to reduce the serc. He mentioned that the epilim is known to bring out a pre-existing hand tremor, which is frustrating. I actually worked out tonight that it is more in my thumb than my hand. When I isolate the thumb movement it is quite extreme. I am going to have to look up my hand therapy books and work out what I can do about it as it is a bit limiting (particularly when I'm tired).

Once again my neurologist reiterated that it will be a few more months before the fatigue eases. We also had a rather depressing conversation about some long term consequences/outcomes of this type of tumour which are bothering me, and will probably involve further testing in the very near future. In the meantime, I have my follow up MRI booked for 2 weeks time.

Saturday was the bad day this week. I had had a bad nights sleep this week; Angus has been up a few times during the night, and on Friday night Charlotte had woken crying her eyes out saying that she had had a bad dream, that Mummy went back to the hospital. sigh. She wouldn't settle until she came into our bed, and even then she would drift off to sleep, then startle awake every few minutes and reach out for me. So I'm not sure if it was because I was overtired (I'd also managed another trip to the gym on Friday), but Saturday morning, within the space of 15 minutes, I went from feeling great to increasing fatigue, nausea, vertigo, and vomiting. I was wiped out for the rest of the day although we did manage a trip to the park which was lovely.

This is what I am finding so frustrating. Never knowing if today is going to be a good day or a bad day, or how tired I'm going to be. I know it will get better, and that I need to take one day at a time. So today I am grateful for a good day. It was beautiful weather so we went to Queen's park for a wander around to look at the animals which was lovely. This afternoon I manged to potter around doing some cleaning. Such a change in two months. Here is hoping that the next two months brings more good days.

Having fun at the park

Sunday, June 10, 2012

A good week

It has been a busy, and a good week. I can actually say that I have improved significantly this week, Over the last few weeks I haven't actually felt any major change, so to be able to really say "I feel better" is wonderful.

Tuesday morning I had a big change. I've had a strange fuzzy feeling in my forehead for a while now. I actually wondered if it was nerve damage as it was only in a small patch, but it was weird and annoying. Tuesday morning it just...went away. It made me feel so much lighter. Tuesday was also a big day as I met with Kylie, a support worker from the charity Mummy's Wish. As some of you have realised, accepting help is not part of my nature. I have mentioned this charity before - they help Mum's who have cancer. Initially I didn't see how I was part of that group. However, while I was in hospital, James and I contacted them as we realised that we did need help. They have been wonderful, and have organised a cleaner to come fortnightly for a few months. It just takes that pressure off me having to do everything. She stayed for an hour, brought a few treats for myself and the kids, and we talked about what was happening. I felt like a huge weight had been lifted to just talk through it all. She validated how I was feeling, and that I wasn't alone.

Thursday was the one bad day this week. I felt very nauseous in the morning and needed a nap both morning and afternoon. I manged to do the vacuuming but it took a couple of hours (by the time you pick up the toys, and put things away, it is just exhausting). Thankfully it was a daycare day so I also had some peace and quiet.

Friday I was feeling good again. We walked the kids to daycare and I was saying to James on the way home how good I was feeling, and then of course how guilty I was feeling about the kids being in daycare and about the house cleaning. Mind you, as I'm saying this, I'm huffing and puffing and plodding up the street, as I'm still pretty slow. He just looked at me; and reminded me that all these things are helping me get better. So yes, I need to just accept the help.

But I did sit and think about how I'm feeling. And I'm over it. I'm over being sick. From now on I don't want to be sick, so I'm not. I know, I'm not "better". I need to find a word to describe where I'm at. "Recovering" still implies being sick. I guess I'm "rehabilitating". "Impaired" maybe? "Damaged goods"? I know I'm still symptomatic. The hand shaking is bothering me. My cognitive impairments are annoying (particularly when I'm trying to talk to people. I'm sure no-one notices, but it is hard work to hold a conversation). My balance is a bit off (I fell over in the kitchen again this week). I've been getting chronic headaches. And the fatigue is still there. It creeps up on me and bam! I'm shattered. 

But all that aside, I've had a good week. Today I went back to the gym. I did 40 mins of cardio work, which may have been a tiny bit too much even though it was low intensity. But I did it. I even drove there. This was the first time I drove in nearly two months, and I survived that too! Two months ago I was having vertigo attacks, vomiting, and going rapidly downhill. I have come a long way in that time. I am quite proud of myself that I made it to the gym when just 7 weeks ago I couldn't even walk, or see properly.

This week we are going to see the neurologist again for a follow up so I will be bringing up all my symptoms with him. I may need to go back on some medication. I'm also hoping he will order another MRI as I want to know what's happening inside my head. In the meantime, I am trying to go back to living life as normal as possible, and not being sick.

Friday, June 8, 2012

How the kids are coping

It has been nearly two months since I went into hospital, and it is still affecting the kids, particularly Charlotte. Even this morning she made a comment: "I'm glad you came home". I asked "from where?" "From the hospital, I'm glad you came home". That was the sound of my heart breaking.

In the first week or so home it was really hard on both of them. I had no energy, so picking them up was impossible. I slept a lot. Angus spent that week mostly with my Mum. He was very clingy to her, and would go to her first if he wanted a cuddle. Most mornings she would get him up and he would just snuggle into her on the couch for about 20 mins. However, once I started getting more energy back, and being able to do more things, he started to come to me more and now he seems fine. He isn't sleeping well at night but I do think he is teething as well.

Charlotte on the other hand, was the complete opposite. She wanted Mummy to do everything for her. Which was very hard for me physically, however dealing with her behaviour was harder. Because if someone else tried to help, we had a massive tantrum. She often told Mum and James that she didn't like them, and didn't want them. Of course she got reprimanded for this behaviour, but it didn't really stop it. Her clinginess was most noticeable at dinnertime. She had to dictate who sat where around the dinner table. It was easiest to give in on this issue. But even then, she would literally move her chair so that it was touching mine, she wanted to be close to me as much as possible.

I'm still not sure how much of this is normal toddler behaviour, or is because of my hospitalisation. There have been a few instances where she has said things that make me realise it has affected her. When James and I went to the neurologist a few weeks back, she began to chuck a tantrum as she wanted to come too. It took me a while to work out that she was worried I was going to the hospital again and not coming home. Once I reassured her that I would be home by lunchtime, she calmed down. One night she said to me "I'm so glad that you came home from the big doctors (the hospital) and we can be best friends again". That one hurt.

I realised that we had done her a disservice. When I first got diagnosed, we decided not to tell her about the tumour. At that point, she was only 2! We did talk about Mummy being a bit sick, and needing extra rest, but we didn't focus on it. I never honestly thought that over 6 months on it would still be such a big part of our life. And now she is nearly 3 and a half, heading to four! She is aware of so much more and I think is old enough to comprehend everything. Of course she knew that Mummy was sick and had to go to the hospital, but I'm not sure she knew exactly why. So the other day I sat her down and had a talk about being sick, and why. I told her that I had something growing in my head, and that the doctors gave me some medicine which made me very tired. She asked if she could see the tumour (which was very cute the way she did it).

Overall the talk went quite well. I know it may take time for her to relax about what has happened. Every time we talk about doctors I think she feels I'm going to go away again so we need to continually reassure her. However I know I've done the right thing by talking with her about blobby as my need to go to doctors isn't going to go away any time soon. In the meantime I am doing my best to spend quality time with her. I think this weekend I may take her out for coffee for a mother/daughter treat.

Monday, June 4, 2012

On our own

Mum left today. After being here for 5 weeks. Wow. We miss her already, although I am sure she is sitting at home in the peace and quiet right now and going "aaaaahhh". She has been incredible. There is nothing she hasn't done in the past few weeks. From changing wet beds in the middle of the night to doing cleaning, changing nappies, wiping snotty noses, making lunches, feeding children, chasing, playing; basically being there. Not least was the emotional support she has given James and I, and for that we will be forever grateful.

One thing Mum has done is break a few of my bad parenting habits.  Yes, shocking I know, but I had some bad parenting habits. Like letting Charlotte eat toast on the couch. But we don't do that now which is great. And we seem to have formed a bit of a better morning routine than what we had before I got sick which always makes life easier.

I feel this last week I've been a bit stagnant in my recovery. Still good days and bad days. I dropped down the dex dose on Wednesday, and Thursday was a terrible day. I woke up with bad vertigo, and terrible fatigue. It didn't help that Angus was up  for 2 hours in the middle of the night, so I didn't have much sleep. However James and I had booked Gold Class movie tickets for that night (hey, we only had a few nights left with a free babysitter!) so I was determined to go out. We had been given quite a few vouchers for Christmas from various family members and all combined it meant we could have a very indulgent night with movies and food and wine. That counts as my dinner out (I've been craving a restaurant meal, well it wasn't quite that but it was still dinner out).

I am still getting some odd symptoms. The hand tremor is actually getting worse. It is very noticeable on some days, such that I have difficulties holding things. On a bad day, my memory is absolutely terrible. I get this strange fuzzy sensation in my forehead and I can't think straight. I've also been getting quite a few headaches. I've also noticed on bad days that my balance is worse than say a few weeks ago. I'm seeing the neurologist next week so will obviously bring all of this up with him. I am very tempted to increase my  medications again but don't want to do that. One great thing about dropping the dex is that for the first time in weeks I have had a good, solid 7 hours of sleep!! It only happened the once (thanks to two children for sleeping through) but, I am actually sleeping again.

Now that Mum has gone James and I need to work on getting back to normality and our routine. I'm still very fatigued, and by about 11am I am hanging out for a sleep. I've been having a nap while Angus naps and we are going to keep doing that. This is one of the perks of James working from home, he can keep an eye on Charlotte while I have a lie down. It is only for 3 days as the kids are in daycare the other two. I also find by late afternoon that I've had enough for the day, so sitting on the couch and watching playschool is about all I can manage.

However today hasn't been as bad a day as I feared. Charlotte played playdough for well over an hour this morning, and surprisingly Angus didn't want to eat it. We then had a play outside while I hung some washing. Afterr our nap we managed a trip to the shops, and had an early tea. I think I need to go and have an early night now, but here's hoping to more days like today.

Thursday, May 31, 2012

The threenager

I have a threenager. I am not enjoying her company too much right now. We are having some issues with her behaviour. I think some of it is related to blobby and my being in hospital (which I'll write about separately) but I think most of it is the fact that she is 3. Some days I'm ok with this - every one has difficulties with 3 year olds and their behaviours. And other days I feel like an utterly incompetent human being. The threenager is crafty like that. They target your weaknesses and just go for them. I thought I would share an exchange that happened the other night, just in case I'm not alone.

Sitting down to dinner.
Me: Charlotte eat your dinner
C: I want sauce on it (yes I am one of those parents that puts tomato sauce on my child's food. Hey she eats it, and it's got vegetables in it right?)
Me: Look there is sauce on your pasta, and on the yummy rissoles Daddy has made.
C: I don't like rissoles.
Me: Sigh. Daddy I would like some wine with dinner.
C: I need to go to the toilet
Me: Ok off you go
C: But you need to watch me.
Me: I can see you from here (the toilet is literally 3 metres or less from the dining table in a straight line).
C: (howling, falling on the floor) but I want you to take me. I can't walk
Me: Go to the toilet before you have an accident.
C: But my legs don't work (howling). I can't stand up!!!
Me: Sigh. Daddy did you pour the wine?
C: I neeeeed you to watch me!!!! I caaaan't waaaaalk!!
Me: If you don't get up and go there is no dessert (yes I am one of those parents that bribes their children with dessert)
C: (after about 5 mins of howling, with her crawling to the toilet, she arrives. I am doing the competent parent act and ignoring bad behaviour. See how well it is working). Uh oh, I didn't make it (wees on the floor).
Me: SIGH. (cleans up the mess). Back to the table and eat your dinner.
C: But it's got sauce on it, I don't want it.
Me: Daddy, there isn't enough wine. Not nearly enough.

Tuesday, May 29, 2012

A bit of an apology

I have just re-read some of my old blog posts, and I think I need to offer a bit of an apology. Wow I sound miserable.

I started this blog as a way to just get out my thoughts about starting the IVF journey again. I had hoped that people might read it, but really just wanted to write it for myself. Every now and then I wrote a post that I hoped might help someone in some way. Either through further understanding of the IVF process, or just letting them know they aren't alone. Then I got pregnant, and so began being sick.

Occasionally I would write a post that on some level I thought was witty/insightful/thoughtful. At the back of my mind was always the hope that one particular post would go viral and people would say "wow what a witty/insightful/thoughtful post, I will read her blog". But that hasn't happened. Oh well.

Nevertheless I have more readers and followers than I ever thought I would, and I am truly grateful for everyone who reads this, as I know you are all supporting me.

But an apology. Over the last few months of posts there were times I thought I was being upbeat, and positive, but a lot of it doesn't come across that way. Particularly for those 6 weeks post the radiation. I didn't realise how down I was feeling on a day to day basis until I re-read the posts. Because physically I wasn't doing too bad. I was still doing most of our normal routines; taking the kids to swimming, doing activities, catching up with friends and so on. But I can see the turning point where my brain was starting to swell (about the time I started the rehabilitation, that's when the fatigue started to get worse).

However, what does come across is how anxious I was. I spent a lot of time worrying about the worst happening, and my brain swelling. Well now the worst has happened, and I survived, so now I can stop worrying about it. I don't think I will stop worrying about the future completely. There are still many milestones I need to pass. And blobby will always be there, lurking away (which is why I need annual MRI's as he could always decided to metastasise and then we are onto a whole new ballgame). I know I have some issues to work through now. I feel like I have lost a whole chunk of time. The last few months are a blur and when I think about losing that time, I get quite upset.

But when I look towards the future I feel optimistic and hopeful. I am feeling almost ready to go back to the gym and start on some reconditioning. Then I might think about some rehab again (maybe, I feel a bit scarred to go back). I can't quite see the light at the end of the tunnel but I know that I am getting better and I am hopeful that I will be back to my old self sometime. Not the sick, pregnant, IVF stressed me. But the old me.

Saturday, May 26, 2012

An up and down week

I feel like this has been an up and down week. I actually felt like I hadn't improved at all, but after chatting with my Mum she feels I have. She has been pulling back on doing things with the kids and the house so I am doing more, and I guess I didn't really notice that. But I have had a couple of bad days where I needed an extra lie down, or I didn't feel up to going for a walk. This morning I actually felt nauseous which I haven't felt for a little while. But then we had a big outing to the shops for a few things (probably the longest I've been out and about in weeks) and I was exhausted afterwards. I did however manage to make chocolate fondants this evening. Sadly they turned out more moist chocolate cake, which is shame, as it means I obviously need to practice making them again. Such a shame.

One big milestone this week was that I stopped the epilim (the anti-convulsant). I wasn't too sure if this was helping me at all. However the day after I had some weird side effects. The ataxia (hand tremor) was incredibly bad; to the point that I couldn't hold objects properly. By the end of the day it had worn off but it was very disconcerting. It is still there a bit today. I will keep an eye on that (and the nausea) and if they continue I might need to go back on the epilim. I was originally put on that as they thought I might be having a migraine type attack, or the nerves were irritated and doing odd things, or something. Unfortunately that same day I slipped and fell down the stairs. I don't think it is related, but obviously can't be sure. It was probably quite comical to watch. I literally bumped my way down 6 steps. I now have a huge bruise on my bottom, and am very sore all over.

I have however, started taking half a valium at bedtime. The dex is really messing with my sleep, and some nights I was only getting 4-5 hours. Once I started taking the valium I found I was getting a good 4 hour chunk, and then a few hours after that which was heavenly. Although that all goes out the window if one of the kids wakes up. I hate that I'm taking something like that, but I know once I'm off the dex I can also stop taking it.

I also had a bad day this week when I finally pulled my head out of the sand and asked James how the finances were looking. I wish I was still oblivious. Ouch is a good word. A combination of medical bills, daycare fees, plus all the incidentals from my time in hospital (car parking, petrol, extra expenses etc etc) has hit the hip pocket hard. And I shed a tear about that. And then got a bit angry. We will be fine, all the bills will still get paid (we won't have any savings left though). But it means no little extras at all. I was hoping that we could take the kids away for a few days but that won't happen. I bought some new clothes last week (a total of $70 to get me through winter) and am now regretting that. Stupidly I am craving a nice restaurant meal and was hoping James and I could have a treat but that won't happen either. And then I got annoyed at myself as there are so many people for whom these things aren't even possible anyway. So I should stop complaining. I just get angry when I think how much this has cost us in real terms. But I felt that way about the IVF too.

I have to keep telling myself that I will get better; and then I can go back to work and ease the pressure financially. My goal is to be back at work by the end of the year. Now blobby just needs to co-operate and start behaving!

Wednesday, May 23, 2012

It's all about perspective

I like to read blogs, and recently I came across a blog post by Jenny Lawson "The bloggess".    She is a successful American writer, and hilariously funny. The one post that had me in stitches though, also struck a chord on a personal note.

The post "And that's why you should learn to pick your battles"  is about how she was going shopping, and her husband, Victor, tells her she had better not buy more towels. So she doesn't. She buys a $100, 5 foot tall (hideously ugly) metal chicken. Victor is not impressed. But she didn't buy towels, so he really shouldn't complain. 

Part of Jenny's (and her friend Laura's) justification for buying the chicken (which they called Beyonce) goes thusly:

"me (Jenny):  ... And when our friends are sad we can leave him at their front door to cheer them up.
Laura:  Exactly. It’ll be like, “You thought *yesterday* was bad?  Well, now you have a enormous metal chicken to deal with.  Perspective.  Now you have it.”"  

After I had wiped away the tears of laughter, I decided that I too needed a hideously ugly chicken, for those days when I needed a bit of perspective. Because I know that there is always someone worse off than me. Yes I understand, for a few days there while my brain was happily swelling away, things were pretty bad. And having a brain tumour is pretty sucky, even if it is benign. But I also had a moment when I was waiting for my MRI (I was parked in the emergency room). A family was also waiting with their little boy, and I gathered this wasn't their first MRI or trip to the ER. Perspective.

While we were up home for Easter, I remembered that Dad had received some knick knacks and ornaments as his inheritance from when Grandma passed away. Amongst this was a glass rooster. Ever since it had arrived, Mum had bemoaned this rooster, and how ugly it was. It had languished away in the back of the cupboard for years; and I was going to claim it.

I called him Albert (being a Rooster and all). He came up alright after a quick clean, was carefully transported home, and is now sitting on my buffet. I did briefly wonder if he was worth anything. Without knowing the provenance of the glass (no markings) the best I can hope for, after a quick google search, is that he is made of Murano glass, and that he might be worth about $30 on ebay. Priceless.

So when I am feeling a bit overwhelmed, I just have to look at Albert for a bit of perspective. Because there is nothing like having an ugly glass rooster staring back at you to remind you that things can only get better. Plus he makes me smile, just a little. Maybe he isn't that ugly after all.

Sunday, May 20, 2012

Not quite working right

I'm happy to report that I am still improving every day, even if the changes are small. Today I felt very fatigued so I may still be overdoing it. However, now that the crippling fatigue has lifted, I am realising that my brain isn't quite working right. I'm sure there are some of you (like my siblings) that are chuckling away thinking that it has never worked quite right, but I am aware of a few deficits.

Obviously these deficits aren't that obvious. I'm more than able to hold a conversation, write a sentence and so on. But the OT in me has been noticing a few other things.

I am having some issues dealing with too much noise. Almost like a sensory overload. Friday I had a very busy day. I went early to our local shops and had a haircut (my first one in about 8 months thanks to blobby) and then we went to medicare (yet again) and did some other shopping. So I was already tired before I got to the bigger shopping centre. I found the noise just overwhelming, and struggled to focus on too many different things at once. My hearing seemed to drop and I simply couldn't hear very well. It was very strange, and I have noticed it at other times too.

I've also noticed that my memory and recall are terrible. I was aware as I was getting sicker that recalling names was difficult. I completely forgot my nephew's names for a day, and while I was in hospital there were a few days when I couldn't remember Angus' name. I just pointed and said "the boy one". The nursing staff would start their shifts by saying "Hi I'm..." and then walk out and I wouldn't have a clue who they were.

I thought that this had improved, but my memory in general is still a bit affected. But I am also realising that my general planning skills are a bit sketchy too. On Friday, I tried a new recipe for butter chicken. (a new favourite dish; but I hadn't been able to find a recipe to my liking). It was a fairly complicated recipe with lots of ingredients. And I struggled. I had to read it many many times. And then I had to break it down into steps, get all the ingredients out lined up for each step. Read the recipe again. Double check the ingredients. It doesn't sound like much, but it isn't like me to not be able to easily put a recipe together. Of course the fact that I could compensate and do those extra steps means that my brain is working it out, it's just a bit slower than usual. And the butter chicken was delicious!

I'm not overly worried about all of this. More amused, given that the OT bit of my brain is trying to analyse what is happening. I've read about experiencing cognitive deficits alongside the fatigue that occurs so it is hardly surprising. I'm still too tired to do much reading, but I should start doing  some puzzles to really get the grey matter working. In the meantime, don't ask me to read a map, put groceries away (James has re-organised the pantry and I cannot yet see the method to his madness) or any other major event planning. I could do it, but it may take a while.

Wednesday, May 16, 2012

A few more months

I really need to learn to pace myself better. After yesterday's great day, today wasn't so fabulous. Although I was really just a bit tired, with a bit of blurry vision, so still an improvement from where I've been.

And of course today I saw my neurologist for a follow up appointment. He is happy with how I'm going. The nystagmus has gone which he seemed very pleased with. I'm still having some difficulties tracking with my eyes. I also have a slight ataxia in my left hand (a tremor) and some slightly delayed reflexes which surprised me. He thinks that is due to the swelling still. I don't notice it unless I hold my hand out so it isn't a functional problem.

He did say though that some people after brain surgeries/injury/radiation develop a fatigue that can last 3-6 months. And I seemed to be one of those. Lucky me. There isn't too much I can do about it except ride it out, rest as much as I can, get help as needed. He really did emphasise the time part, but also that by 3 months I should be "back to normal".  Although he did mention a drug that they can give that boosts energy levels (I missed the name) but I think it might fall into an amphetamine category and he didn't really want to prescribe it just yet. Which I'm ok with. Yesterday WAS a good day. I will have more of them. I still managed another walk to the shops this afternoon so that is two outings in one day which is very impressive.

In the meantime I am to stay on the steroids. He seemed a bit unsure how to take me off them (he mentioned that he has been talking with my ENT, and will talk with my oncologist. I think I have them all a bit stumped). But I can stop the epilim over the next week which is good (I don't think that one is really helping too much, and it just makes my appetite go out of control!). I go back to see him in a month.

My goal over the next week is to take on more of the normal routine here, I'm so aware that Mum has been doing so much and we need to think about when she can head home. I am hoping that by the end of next week I will be able to cope on my own. Baby steps.

Tuesday, May 15, 2012

A good day today

Today was a good day. For the first time I woke up and felt like I could cope. I could actually think about things that needed to be done, and look forward to the day; not wishing I was back hiding in hospital!

Of course by 9am I was feeling pretty shattered but nevertheless I managed to stay up all morning (I did this yesterday too) and we went for a walk to the shops again. I've been doing this most days and today it felt easier. I could do more than just walk and talk at the same time. I even managed to put some washing in the machine, potter around and so some tidying up, and make some fresh custard this evening (yummo, why have I not made homemade custard before!)

It is such a relief to feel like I am getting better. Up till now I have seen improvements, but not actually felt like I was getting "better". Finally I can see the light, although it still feels a long way off. It is a strange feeling, to look at other people and wonder what it feels like to be able to move effortlessly. But it will happen.

Tomorrow I go back to my neurologist for a review so I am hoping he will drop down some of my meds. I am not sure the epilim is doing too much for me other than increasing my appetite (and sadly my weight) and I wonder if it is contributing to the fatigue as well.

But for today I am celebrating a good day.

Sunday, May 13, 2012

A post for my Mum

I wrote a post a long time ago about Mothers day and how it has mixed feelings for me. I guess some of those feelings haven't changed. As a day, it doesn't have a huge meaning for me. I can still remember the pain of never knowing if I would celebrate it myself. And I am still so aware of how many people continue to share those feelings.

However I do like making the day a little bit special, as I think we should take a moment to reflect and celebrate any milestone. Today we had a lovely lunch. I got a gorgeous card and some chocolates and that is all I need. For once though, my own Mum was here, and I hope that she felt just a little bit spoilt today (with a card and chocolates too). Because my Mum doesn't seem to realise how special she is. I find this unfathomable, as she means so much to me. So this post is for her.

I would say we had a happy childhood. I never felt that we missed out on too much. Money was tight, but I never knew that. Sometimes I wished I had had the latest toy, or newest clothes, but then looking back now I know we didn't' need any of that.

What I have is memories of my Mum being there. I always thought she was a great cook. Making slices and biscuits all the time. Her lasagne was delicious (Tuesday night was always spaghetti bolognaise or lasagne, still my favourite dishes of all time). On Sunday nights we would occasionally have pancakes after watching Young Talent Time (the original that is) which was such a treat. Mum denies that she was a good cook, but I feel my confidence in the kitchen comes from her.

Mum was always there for every activity. She helped out at school, came to all the events, ferried us to and from school sports. She was just there. I remember once coming home sick from school and she sat in bed with me and read books all afternoon. And her cuddles were just warm and snuggly. I always loved that moment when I was snuggling into her, feeling so tired that I couldn't understand the conversation around me but could still hear her voice.

I also don't think my Mum understands how proud of her I am. She has a background in medical research (surprise surprise) but retrained as an enrolled nurse when we were in primary school. She came near the top in the state in her exams, and worked as a nurse for years. Her general knowledge is amazing (always has been - we used to sit and watch "A country practice" together and she would tell me what they were doing wrong tee hee) and I always admired her ability to juggle us, shiftwork, and just being a nurse. Of course that came in very handy when she had to help give me some IVF needles - you know you have a close relationship with your Mum when she is sticking a big needle in your arse!

Of course, as I've become a Mum I have really appreciated her calm, her strength, her stamina. She has been there for us for both the kids births. I wouldn't have gotten through the breastfeeding issues with Charlotte without her. Or any of the other "new mum" moments. She has taught me so much. And of course, having her here right now, has been lifesaving. I couldn't have come home from hospital if she weren't here, looking after the kids.

So to my Mum, even if you think you made mistakes, even if you think you aren't special, you mean the world to me.