Saturday, May 25, 2013


It is in choosing to rise that we shine - Ingrid Poulson

Recently I read "Rise" by Ingrid Poulson. In this book, she shares the shocking story of what happened to her family after domestic violence, and how she overcame this heartache to rise, to go on. After the initial harrowing chapter of what happened, the book outlines the concept of resilience, how one can (and should) develop it.

As I was reading through the book, I realised that I didn't need to use the strategies in the book. I am already doing them. I have found resilience in my life.

This didn't really come as a big surprise to me. Many people have commented to me on how "strong" I seem. I'm not sure about that, but I do know that no matter how bad the day is, tomorrow is a new day. Hopefully filled with sunshine and unicorns that poop rainbows, but I won't know that till it comes. I'm not saying that every day is all happy smiles. Of course I have bad days when I get a bit down. I try to allow myself those bad days (sometimes only hours) because I know that something will happen to make things just a tiny bit better. One of the kids will make me laugh, or I realise the nausea has eased, or a friend puts a smile on my face.

As Ingrid outlines in her book, resilience isn't about "being strong" every day. It is about acknowledging those bad days, living through that moment, then moving on. 

I also don't have the sense that "it isn't fair". I won't say that I've always been like this. While we were going through IVF for Charlotte I had that awful feeling that I deserved all this pain and heartache. That I was a bad person and had done something wrong in life. Once we were trying again for Angus that sense had gone away, although I was still feeling that "it isn't fair" while pregnant (and sick) with Angus.

But then blobby came along. And you know what, it isn't fair. It isn't fair that I am diagnosed with a brain tumour while my precious children are still babies. It isn't fair that we have to spend so much money on cancer treatment. It isn't fair that I am too unwell to even take care of them. But life, in general, isn't fair. Once you start to accept that, it makes it easier to just get on with it. If I spend every day worrying about why this happened, what did I do to deserve it, then I take away energy to spend with my family. 

Because I haven't done anything wrong. I'm inherently a good person. Of course we all do some not nice things and have a few faults (really, who hasn't), but none of those mean that you will be struck down by illness or tragedy. I've also done some great things in life, and those don't get rewarded with things like winning the lottery either (sad to say).

Blobby has allowed me to recognise that I have great internal strength. I have developed coping strategies and skills that have allowed me to continue on every day, not matter what is being thrown at us. Sometimes this means we ask for help, sometimes it means I have a nap, or go for a walk, or watch some trashy telly. I like to make lists about things that need to be done (either mentally or on paper) and when I get a bit too procrastinatory, simply saying aloud what I need to do is enough to kickstart me into gear.  We all have our own way of coping though and there isn't any right or wrong way.

I see one of the greatest gifts that blobby has given us is this resolution and fortitude to just keep taking it one day at a time. But also that this is something we can pass on to our children. I hope that they will grow up to be resilient adults, able to handle anything this world may ask of them.

The above quote from the book affected me profoundly - "In choosing to rise, we shine". I make my own choices about how I handle blobby. I choose to go to the gym for my recovery, I choose to try and eat well, I choose to take my medications and do what is asked of me by my doctors. I also choose to not sit in a corner and lament the hand we've been dealt. I choose to rise.

(Rise, Ingrid Poulson (1998); Pan MacMillan books is a wonderful read for anyone who needs help finding their internal strength. I highly recommend it)

Friday, May 24, 2013

Something to be proud of

Doing physical exercise has been a part of my recovery process ever since I was diagnosed. I know how important it has been; to maintain my stamina, to maintain my bone density, and to try and keep on top of the weight gain (which I still haven't really managed). My ability to do exercises at the gym has obviously correlated with how I was feeling at the time. Many a day I could only do a low impact workout as all I wanted to do was vomit, while other days I could really push it.

You may recall that back in January I had a strange urge to try running. This only lasted a few days as I then had a bit of a setback. Since increasing my dex dosage again at the start of the month, I have had an improvement in my fatigue and nausea. I was getting a bit bored with my exercise program, so I thought I would try aquarobics. I was a teensy bit apprehensive about this. Not only was I the youngest in the class by several decades, but I also wasn't sure whether I could handle an entire hour in a class. But I really enjoyed it, and after the first week or two I wasn't as fatigued. I found that I could do things in the water like running, and bobbing up and down that I simply can't do on land as I get too dizzy.

But after a few weeks of aqua, I got the urge to try running again. I have seen several friends doing fitness tests for a certain weight loss program, and just wanted to see if I could do it too. I wanted to see how long it would take me to do 1 km (if I could even do that) on the treadmill. I was so proud of myself. Not only did I do the km, but I did it in 8 mins, 22 secs! I've done it a few times since and have brought that time down to 7 min 51secs. I can't believe that I am actually running (I've never been a runner; I look all ungainly and quite silly. Plus I really need a very good sportsbra as I am likely to give myself a black eye). I'm not sure how far I want to take it - but perhaps I should try working up to 5km.

Yesterday I also re-did my weights program. I had lost some motivation for doing weights, and I really do need to keep doing that to keep my bones nice and strong (especially since I had a fall in the kitchen this week, stupid socks on slippery floors but ouch!). The trainer gave me a whole stack of new exercises to do (one is called "the Torsinator" which just makes me giggle). At the end of our session, she commented that "I was really very strong". I don't think she realises how much that meant to me. To think that a year ago I was so weak and ill I could hardly even walk to the shops. That when I got home from hospital I couldn't lift up my son, or walk up the stairs. I could hardly even push myself out of a chair. I'm now leg pressing 100kg, chest pressing 20kg, and running!! I feel just a little bit proud of my achievements. Now to work on shifting this weight.

Thursday, May 2, 2013


The last few weeks have been incredibly hectic. I found my stress levels have been up and down but thankfully we seem to be settling down again and I'm feeling back in control.

The big thing obviously was all of my follow up appointments. I had my MRI two weeks ago. I'm used to the procedure now, but that doesn't stop the anxiety from building. The following day I was so jumpy. Every time the phone rang I was on edge thinking it was my specialist with bad news. I saw my oncologist the next day and the news was good. No tumour growth! The oedema has settled. No tumour shrinkage either however as my oncologist said, it is early days.

I also saw my neurologist that week who confirmed all of that. I discussed with both the dex doses I've been on and how much better I feel on a higher dose. Both agreed that I should go up a dose, however they disagreed on the cause of my symptoms. My oncologist thinks that the dex is keeping the symptoms under control, my neuro thinks the dex is causing the symptoms. Either way, I have since gone back up to 0.75mg and I feel good again. Still a bit tired, but the nausea has decreased. Both seem to think it will be months before I can get on top of all of that. Both specialists also confirmed the nerve damage to my trigeminal nerve (face) is still present but that is more annoying than anything. I now don't need to see my oncologist for a whole year, and my neuro in 3 months just to check on the dex. I can't believe that I am moving out of the treatment and active management phase into the monitoring phase! It feels very strange.

Of course other big things have been happening. We have been getting quotes for the house renovation which has taken up a lot of time; and surprisingly a lot of emotional energy. It is a big decision though with a lot of money to be spent, so I do want to do it right. We also finally got the solar panels installed on our house, fixed up the garage door, demolished an 8 metre high tree, and did some painting around the house. I've been going to aquarobics, started seeing a dietitian, and applied for yet another job.

The kids have been....livewires. It is like a switch got flicked on Angus and he has turned pure evil. We are having a lot of time outs with him. His favourite activity at the moment is playing in the dirt, throwing the dirt, putting the dirt in the cat flap. Or throwing rocks at his sister, hitting his sister, pushing his sister. Sigh. Charlotte unfortunately was sick this week with a nasty bout of tonsillitis but we have noticed a developmental change with her as well where her language, and emotions have taken another leap forward.

And not least of all of that, yesterday was my birthday. I had a fairly quiet day, but it was still in stark contrast to a year ago where I had my birthday in hospital. I am still thinking about this time last year and how sick I was. The busyness of the last few weeks, and how much has happened in the same time that I was stuck in bed, is staggering to me. I am looking forward to things calming down over the next few weeks, that is until we really get going with the renovations. But then it will be a different sort of stress; one which I am really looking forward to as the end product should be fabulous!