Slack

Well I have been slack. It has been months since I last posted. But I have been a bit busy. In these last few months we had a seemingly never-ending run of house guests. I saw all of my family (even if only briefly). We renovated our kitchen, laundry, outdoor retaining wall and finished off a few other bits and pieces (new garage door, new windows, installed solar panels, replaced a hot water system). We had some time away with my parents at the beach, then travelled onto Sydney for my baby brother's wedding which was wonderful and hectic and tiring. I seem to be on an endless quest for a job. We've enrolled Charlotte in school (eek) for next year, and James had another trip to the states.  So I guess I haven't been that slack.

Through all of this blobby has been behaving himself - sort of. I felt like I hadn't improved yet looking back, the dizziness is slightly less. However, blobby is not playing nice with the dexamethasone. My immune system has taken a battering and I am perpetually sick. I have had tonsillitis 4 times in the past few months and a never ending battle with coldsores. So when we got back from the wedding, I decided to go off the dex. I had gotten down to 0.5mg and was feeling quite good. The first few days were ok; I felt "lighter", my mood had improved, and the symptoms were under control. Then I got more fatigued. So fatigued. My bones hurt they were that tired. The nausea got worse. I started retching several times a day. Of course I was in denial that anything was wrong. Until a good friend made me realise that perhaps I wasn't ok. Last week, after vomiting half the day, I contacted my neuro who recommended I go up to the hospital. By that time, I had gotten my BP up to 160/100 and my heart rate up to 140 so I was put straight through. It turns out I was dehydrated too so put on a drip, given some zofran (sweet sweet zofran) and rushed through for an emergency CT scan in case there was more swelling. Thankfully blobby looks just the same. I was let home later that day - back on the dex (and at a higher dose of 1mg).

It's been tough since then. The dex mucked me around and I got sick again with tonsillitis (and a needle in my bum - ouch) and I have only been coping with a high dose of zofran. But today I feel a bit better. I am so so frustrated at this setback. Right now I am too tired to worry about too much else but I have had enough, and James and I have spent a bit of time researching other medications and options and looking at clinical trials.

On top of this, I have commenced tests to investigate my ever increasing blood pressure. I've done two 24 hour monitoring cuffs (the first one didn't record - grumble) which are looking ok but this weekend I have to do a sleep study. I still have to do an echocardiogram, ecg, bloods and 24 hour urines but I think it will all come back with nothing more than "white coat hypertension" but we'll see.

I promise to do more posts about some of the big things going on. I have written countless posts in my head but they never seem to make it to paper. But I will try to be less slack; once I find the time.

Resilience

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)

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.

Hectic

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!

Anniversaries

We have anniversaries for so many things. The occasion of meeting someone, weddings, births, that trip you took. Some of them pass without much fanfare while others stick in your mind.

I was thinking about dates and didn't even realise that this week 5 years ago was when we conceived Charlotte. Well technically she was conceived months earlier and then put in the freezer, but this was the week that she was frozen, then transferred.

Co-incidentally, this week a year ago was when I went downhill, and was admitted to hospital. This is the anniversary of when things became really hard. It started over the course of a few days, although looking back now, I had been getting sicker for a few weeks before hand. Reading back over old blog posts, I wrote on the 3rd April how hard things were and how fatigued I was. Things got worse after that with increasing nausea and fatigue. In hindsight, we were very silly. If anyone else said "I have these worsening symptoms and a brain tumour" they would have hightailed it to hospital. Instead, I kept telling myself it would get better.

It started on a Saturday when I woke up and I had vertigo. I also had the nystagmus then but I didn't realise what it was. Stupidly, I still kept trying to do normal things. I remember that we went to the shops and had lunch. But the kids played up, and I was just about in tears by the time we got home. The next day was slightly better so I think I thought it would all go away. By the Monday I knew I wasn't coping. I spent most of the day in bed. James and I had a vicious argument when I just lost the plot as I felt so sick. We had a visitor for a short visit who I don't think had any idea how serious it all was, although one look at a worried, stressed James should have given them an idea. That night I went to an acupuncturist; I was desperate. It didn't make any difference to the dizziness, nausea and vertigo but might have been relaxing. I drove there which given I was seeing double was really very stupid, but that was the last time I drove for nearly 3 months. Tuesday was a blur of vomiting and lying down - I was just trying to get through the day until Wednesday when I had an appointment to see my specialist.

It was such a relief to go and see him, even if I did vomit the whole way there. The kids had swimming lessons that morning and I did think that we could still make it after seeing him; again we were in such denial. Even when he said he would admit me I still thought that I would go home after a day or two. How wrong was I.

Three weeks later I was home; fatigued, weak, still dizzy, and medicated to the eyeballs. Every day since then has been a battle to manage my tiredness, nausea, the kids, the meds, appointments, my recovery. I've had quite a few setbacks along the way. Blobby has taken a lot of things from me. I am so paranoid now about my health and the kids as well. I am scared to plan things because I don't know how I feel. I want to go back to work, but on a bad day that thought scares me.

But being sick has shown us how many special people we have in our lives, and for that we are grateful, and we appreciate every one who has helped us along the way.

I have my follow up MRI, bone scan, oncologist and neurologist appointments next week which is making me feel anxious. It doesn't help that I've been having a few bad days with worsening fatigue. I did have some tests done the other day which are mostly normal but made me feel anxious, although my GP has referred me to yet another specialist for follow up. I hope the MRI shows no growth again, and if that is the case I hope I can start to move forward with confidence. Blobby has beaten me up, but I'm still here so he hasn't won yet.

All kinds of awesome

 I am struggling a little at the moment with motherhood. I am tired. And being tired, and being a parent, are really incompatible. Well, being an energetic, engaged, understanding, creative Mum that is. I get very disappointed that I'm not the sort of Mum I want to be. But then who is? What if the mums I see out and about, with clean, happy, children are just faking? What if the pictures I see on other blogs and facebook groups are only the things that others want me to see? Of course we are all going to paint a happy face, but what if that is at the cost of thinking "I am alone; I am not doing this right" when really, we are all doing the same thing? Just trying to get through the day without resorting to alcohol and rocking in the corner.

So today I had an AWESOME day. Filled with all kinds of, well, awesome.

I started the day with a sleep in. Angus didn't wake until 6.38 am. Awesome! (he usually wakes at 6.18am. Give or take).

Once the kids were up and breakfasted, Charlotte decided that she wanted to do some painting. With my awesome parenting skills, I ensured that the mat was on the floor, and smocks were on. We had a great time painting bits of cardboard (Charlotte told me that they were for a dog house, who am I to argue). She then proceeded to mix up most of the paint. But I saw that it was a cool swirly pattern, so I quickly dipped some paper in and made some truly awesome pictures that we can then use to decorate cards with. The kids were happy. How awesome was I!

Swirly painted paper that looks really awesome

I cleaned up hands and faces, and hair, and was feeling pretty happy with myself. Probably should have checked their feet too before they walked all over the house.

Can you see the paint, that was oozing between the toes?

I then went and put the washing on, because I am such an awesome Mum and am completely on top of the cleaning. The kids were playing happily upstairs. So it was nice to walk into my room to see this: a dinosaur, barbie massacre.

Then I decided to make some fresh bread rolls for lunch. How awesome is that! The kids "helped". They truly did turn out awesome.

Fresh, homemade wholemeal rolls. Yummo

 
I may have made a bit of a mess. It may still be there, waiting for someone else to clean it up.

We went off to the shops to get things for dinner. I made a point to wash Angus' face before we went. I probably should have washed the paint of my legs too, but I was trying to show how awesome I was to everyone.  Perhaps I should have brushed my hair too.

Isn't she just delightful

To top off our day, we went for a play at the local park. After a few minutes, Charlotte decides that she needs to go to the toilet. Right there. Awesome. On the plus side, I did shower them both when we came home, so both children are clean and showered before dinner. Awesome. And I can feel happy that the floor is clean, in parts (mainly the part where Charlotte had yet another wee accident, Angus spilt his milo, and where the paint was. But if they keep this up the whole thing will be clean eventually). The washing is still drying so I don't have to feel guilty about not putting it away (it was a rainy day today).

Angus saying: "Mum, stop taking my picture and help me!"

While I write this, I can hear the kids happily playing together. It goes like this:
Charlotte: "Angus, don't hit me. Angy do you want to jump on me? Angus let's climb on the coffee table!"

So really today was all kinds of awesome. It just depends which way you look at it. I hope your day was awesome too.

Recognising how far I've come.

Once again, the last few weeks have been filled with ups and downs. But I have been able to recognise how far I've come.

We really have been very busy. Nearly two weeks ago, Angus turned 2! I can't believe my little baby is growing up. We had a busy few days with Mum and Dad arriving. We had a little morning tea with family on the weekend so there was lots of baking (as well as some cupcakes for his actual birthday which he spent at daycare). It was a lovely weekend. Then on the Monday I had a job interview. I was surprised that I got an interview after applying for the role, since it was a little out of my previous experience. I know everyone finds job interviews stressful, but I don't think that I did quite enough (especially since I haven't heard anything, which I'm assuming means I haven't got the role). 

The fish cake

Angus enjoying some cake

 Tuesday we had a HUGE day. I took the kids off to see the Queensland Symphony Orchestra's kiddies concert. We drove into Southbank and made it to the venue. Charlotte loved it - there was a ballerina, and violins, and tuba's. They do a good show. Angus unfortunately, cried pretty much the whole way through although he did stop to clap. Afterwards we went to the lagoon and had a play in the water, followed by lunch. It was a lovely day. We all had a little lie down when we got home, which is when I realised Charlotte was running a temp. Overnight she got worse (38.9 at one point) so the next morning we had to take her off to the doctor.

With one dose of antibiotics she was already on the mend. So that afternoon on a whim (well not really, it is something we have talked about for ages), we went and adopted a new kitten! Her name is Abby, and she is adorable. Charlotte LOVES her. Possibly a little too much. The poor thing has been put in the dolls cradle, the shopping trolley, the sleeping bag, the dolls house, and carried around like she is a toy.

A very happy Charlotte and Abby the kitten

Also on Wed. I made the decision to lower the dex. I'd been feeling so good, and with the easter long weekend coming up I knew I had a few days with James around to try and wean. Thursday afternoon the withdrawals started to hit me. The fatigue became a lot worse. Friday we had a quiet day (although I did make hot cross buns); Saturday I managed a trip to the shops in the morning but that was it. James took the kids off to Bunnings in the afternoon to give me a break. I was really struggling. Sunday was even worse. I spent half the day in bed with an upset tummy. It wasn't quite how I wanted to spend easter. However by evening I was feeling better.

Monday things were improving and we had yet another big day out to GOMA and the Qld Museum. Today I am feeling a lot better. I am still tired, but I think I am over the worst of the withdrawals. I am a bit dizzier than I would like although I have only had to take the occasional anti-nausea tablet.

Even a few months ago, there is no way that I could have managed half of what the last week held. I was too scared to do something like take the kids out alone in case I couldn't cope. Yet I managed and we had a great day. A few months ago I wouldn't have even thought about applying for a job, let alone go to an actual interview. And even though last weekend was really (really) rough, I bounced back quicker than I have before and I'm hopeful that I'll start feeling energetic again. Even at the gym I have to realise how much I can now do. Last week I leg pressed 110kg. Just under a year ago, I couldn't walk.

I am feeling a little emotional at the moment. The anniversary of my hospitalisation is approaching, and it is playing on my mind. But this milestone just serves to highlight what I've been through, and how far I've come.