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.