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.

Thursday, May 10, 2012

Baby steps

After those first few rough days at home, where I really really thought I should be back in hospital, I feel I am making baby steps forward. Today it is a month since I started going downhill. A whole month has passed, some of it in such a blur I have limited recollection of what happened.

But, yesterday I made pikelets for morning tea, and then we went for a walk to the shops (well a wobble). I managed to do some craft with Charlotte in the afternoon. Yesterday I also dropped down the dex dose so I expected today to be a bit harder. And I was dizzier this morning. But again we went to the shops, a friend popped in for a visit, and I managed to make some dessert (microwave self-saucing chocolate pudding, yumm). Charlotte helped too which was very cute.

This is such an improvement on the last few days. The fatigue is still unbelievable. I have no strength. And I am really forcing myself to do things. But baby steps. I am getting very frustrated with myself and really everyone around me so I do need to check that. It will all happen, even if I can't see when.

Also today a letter arrived from my neuro that I need to send to centrelink. We are trying to claim a special entitlement where for 13 weeks the full cost of childcare is covered due to exceptional circumstances. On the one hand I feel bad doing this. We can cover the cost, but it is an expense we wouldn't have had a month ago, and claiming this will make life so much easier and less stressful. And then I read the letter and, wow, it is very sobering. I definitely meet the requirement for "exceptional circumstance". The letter was very clear that I have a neurological impairment and need assistance, he didn't hold back. Now to finish that paperwork!

I have a goal that by next week I can easily walk to the shops without collapsing, and to get through the morning without a nap. And I can feel alot more baking coming on. The OT in me approves, but the weight loss part of me is slightly dismayed. One of the side effects of the meds is a HUGE appetite. I can eat and eat and eat and not feel full. I'm not sure baked goods are necessarily the best things to fill up on but oh well. Tomorrow I think I need some Anzac biscuits, for therapeutic purposes of course.

Monday, May 7, 2012

So much harder than I thought

It has been a tough few days home. I naively thought that I could just get back to a normal routine, maybe be a bit tired. Nope. I'm exhausted. I am limited to lying on the couch, shuffling to the kitchen and back. I can't walk up the stairs (well I can but it takes a while). Showering is exhausting. I bent down to get something off the floor and needed help to stand. I'm shocked at how fatigued I am. The dizziness is actually manageable, but then I'm not really moving much so that is no surprise.

It didn't help that the first night home I had 2 hours sleep. Both kids are sick and snuffly and Angus was up half night. Charlotte wet the bed. Coupled with the insomnia that the dex brings, it was a particularly unpleasant night. Last night was alot better.

I know that being in hospital wasn't necessarily helping me recover quicker, but I do wonder if I came home too soon. However the deconditioning I've experienced is scary - I can actually see the divet in my calf where there used to be muscle. I also feel that I was getting a bit too "institutionalised". I was starting to get annoyed at the nurses for not bringing my meds on time. Or when the tea trolley was late (one night I didn't get my pre-bed hot chocolate and that was simply devastating!). And I am struggling a bit to get back into the routine and noise of a household. Those 4 walls were becoming a safe place; and I have craved a bit of peace and quiet these last few days.

I have to remind myself that I am still quite sick. My neuro was quite comfortable to keep me in for a while longer. His parting words were "there really was a lot of swelling, it may take a while to get back to normal". When I got home I had a good look at the MRI. It wasn't a particulary good quality scan (which is annoying as it was a very expensive one!) as they seem to have taken many larger pictures. I think they were checking for bleeds amongst other things. However, I think the doctors weren't quite as upfront with me about the extent of the swelling. They kept saying the tumour was the same, which it is. Still blobby, about 1.8-2cm. And then blobby and the "oedema" extends 2 x 2.2 x 2.2 cm into the brain cavity. eep. Thats about a 10% increase in volume. It is displacing ventricles amongst other things. My neurosurgeon initially said he wouldn't operate until that happened. A few comments were made along the way by various specialists that "surgery wasn't necessary" but maybe I got a bit closer than I realised. Which is a bit scary.

I know I just need to take one day at a time. Baby steps, and just be happy to be home and resting. Mum and James are still doing such a great job with the kids. It will get better, I know it will. Time and more drugs is what I need!

Friday, May 4, 2012

I'm on my way home!

Well my neuro has just been and he is happy for me to come home. He said he was a bit worried about me on Thursday as I wasn't well then, but as long as I have the support at home (I do, so much love and gratitude to you Mum and James) then he is happy to let me go. He said he had another look at the scans and there is alot of oedema, and he doesn't expect that to go down for a few months. He also warned me I'm going to have good and bad days so as long as I'm prepared for that.

I'm certainly ready to come home. Yes I'm tired, and that won't change. Yes dealing with the kids will be hard. But lying here won't change that either. Right now Angus is sick so I just want to be home with him (although I'm sure I will then get his germs. ugh, snot. Oh well can't be helped).

Medically the plan is to stay on the drugs, and wean off them slowly. I will go back and see the neuro in a few weeks and then probably again have a follow up MRI in 4 weeks. I just had a quick look at the scan they did 2 weeks ago and it wasn't a very good one in terms of sections so I'm sure they will want a more detailed one. And then we wait, and I try to get back to normality.

And thankyou so much to everyone for their words of support. It means so much. And to so many people who have helped us - there are no words.

Time for one last hospital cuppa before James whisks me away!

Some thoughts on mothering

Having the time in here has made me reflect on being a mother. Before this deterioration (I'm not quite sure how to refer to these past few weeks and I guess deterioration sounds about right) I was struggling. I had soldiered on through the radiation, and really it was a bit tough.

But I was finding being a mother tough. Charlotte's behaviour was - challenging. I know it is normal. She is asserting her independence. Trying new things, pushing boundaries. But it was wearing. Angus was also going through a tough time with wanting to be picked up. He had started squealing, chucking little tantrums (seriously anyone who thinks the terrible twos actually happen at two needs to come live at my house!). He would literally bang his head on the floor, then look at me for that reaction.

So my response was to put the TV on. Let them watch cartoons if they want. Of course I was still trying to do things with them. Charlotte was playing more games - "What's the time Mr Wolf" is a favourite at the moment, as is hide and go seek. Playdough is still fun but is draining as I have to run interference with Angus trying to eat it. Blocks are a favourite for Angus although he is so much happier playing by himself than Charlotte ever is/was.

And I felt guilty. I've needed a daily nap for months now and that guilt - especially relying on James, has eaten me up. The housework slipped. And all of this made me feel like I was the worst mother in the world. Simply because my children were watching TV, or because I wasn't engaging with them constantly. Truthfully I wasn't enjoying the days at all. This just ate me up inside. I still think it's a hangover from the IVF, but I wanted these kids so bad. Surely I should treasure every minute of every day and want to engage with them?

Then I was admitted, and I have seen them for an hour at a time, every day or two (they havent' come in every day as it gets a bit much for them).

And they are doing fine. Angus' language has exploded. Charlotte's behaviour has improved dramatically and she is suddenly doing so much for herself. Whether these things would have happened with me being around I can't say; I am trying not to think that they have thrived without me being around, but I don't think that they have been irreparably harmed. 

I know when I go home I can't run around with them. It will take time before I have the strength to even go for a walk to the park, let alone really just play. But I am going to go home with a new confidence in my mothering. Because it doesn't matter if they watch TV. As long as I am there with them to guide them, to teach the little things, to offer cuddles (Angus has gotten really cuddly now) that is what important. The little things that make up a day are what matters. Being a mum is frustrating, draining, sometimes (often) unrewarding. I want to try to find that one moment in each day that makes all of those hard parts worthwhile. And if that means watching playschool together, then that is what it will take.

I need to shake off this mother guilt. I know it isn't that easy, but there are so many other things I can feel guilty about (too much red wine maybe?). I know I'm not alone in this - so what is your irrational mothers guilt?

Wednesday, May 2, 2012

On coming home

So today has been a good day. I didn't need any anti-nausea meds this morning, although the shower was tiring as usual. I managed to sit up for a while this morning and feel quite good now. My thoughts are all about coming home.

My doctors have been very relaxed about this - they think it is up to me. Last night when I saw my neuro (he keeps late hours) he said "you will be unwell when you go home, so it is up to you. You can always come back". hmmm. Don't plan on coming back. Mum and James would like me to stay in until I can handle the kids. It is too hard to just sit still and tell them that Mummy can't get up.

But my mummy guilt is wracking me. I feel like I should just suck it up and get home. Just deal with it. I am still really struggling with this concept of how sick I am. You may have noticed that I've never really dealt with the whole fact that I have a brain tumour. I've preferred to think that it could be worse, that others have it worse, so I just need to get on with life. Which is fine. And I know you are all yelling at me that it is pretty bad. And I am slowly accepting that. I think soldiering on through the radiation was fine, but it has taken it's toll.

So I am still in this conundrum of coming home. It helps that today has been such a good day. Today was the first time I felt that I could actually cope. I will see how I go tomorrow and if I have another good day then I will try for Friday. I am seriously getting over the hospital routine (still ok with the food though although I would kill for a home made pizza and a glass of wine but that won't happen for a while with the drugs I'm on).

And I've received so many birthday messages today which has been lovely. We had a little "party" in the room this afternoon with some cake and some fake bubbly. Angus devoured the cake, Charlotte had some fun, it was nice. I feel very loved today.

Tuesday, May 1, 2012

Happy birthday to me

Happy birthday to me!

Sorry for all the posts but there is a lot to catch up on. Today is my birthday! Yay happy birthday to me. I usually don't make a fuss about birthdays, the older you get they just seem to pass on by. But the last few years I've really come to appreciate that turning a year older is important. It marks another year has passed, milestones have come and gone, and hopefully we are a bit wiser and happier.

One thing that I have become more aware of too is how much more settled I am in myself. From studying social psychology, I learnt that as we get older, we look back on our younger years with some fondness, yet with no desire to return. And I definitely feel that way. So today I thought it would be fitting to do a bit of a retrospective of my adult life and birthdays I've had.

18th (1995): My 18th birthday was a pretty low key affair. I had been at uni for a few months, and honestly was struggling a little. I lived in a big share house and did find the challenges of adult life, and studying, a bit hard. But it was a fun time. James and I had started going out and were in that bloom of love, despite a few challenges from his family. I was forming friendships, trying to find myself. For my birthday itself we just went out for a few cocktails and tried to act grown up.

21St: I would say this was a very happy time for us. James and I had gotten engaged just before my birthday so we had a joint 21st/engagement party. We had lots of friends. I was still studying psychology but wasn't sure about my future. I would say we had a simple life though – we loved our little flat near uni but we had a mattress for a couch. An intermittently working TV (Dad would come down periodically and fix it), simple food, and a fair bit of goon (it was cheap). Life was good.

25th (2002): James spoilt me with a nice party this year which was lovely, as I was surrounded by dear friends. At this point in time I had been studying OT and was deep in the throes of my thesis. It was a bit encompassing, and I was fairly stressed. This had been a trying time for us. Financially things were tight, and I do think we were in a bit of a rut. Even though I loved studying, I did work hard so I don't necessarily look back at that time with a lot of laughs.

28th: This is one birthday I will always remember. The day of my birthday, we flew into Venice. The actual day was a bit of a blur as we were so jet-lagged we hardly knew what to do. But it began one of the most magical time of our lives. James and I had been through quite a rough patch in our marriage. I had started working and my career was going well, although it was stressful. This trip was what we needed to reconnect, to fall in love again. We swanned our way around Europe eating and drinking ourselves silly. And at the end we decided to start a family.

30th (2007): I've written about this birthday before, about it being so hard. The years after our trip we had been trying for a family. I'd also been working pretty hard at my career, and was a senior consultant then the national injury management advisor for a large company. Socially James and I were doing a lot – going to concerts, seeing friends, dinners out. We had moved to the inner north in Sydney and lived in a cute little terrace. The typical inner-city lifestyle. But that birthday where one day later we found out we couldn’t have children changed everything. None of it was important.

31st: This next year had been one of the hardest of our lives. Infertility had claimed us. I wasn't the same person. I had left my job and taken up a more fulfilling community role. But we had become very introspective and had lost our sense of self. On my actual birthday we went to a concert; I remember feeling very numb although it was a great concert. I had no idea what the future held. The next day we got that call “Congratulations, you are pregnant” and life changed again.

I can't actually recall many details about the next few birthdays. I am blessed to have a nephew and a godson with birthdays either side of mine so it tends to get missed a bit. But that is ok. I think it is important that we make it special for the kids though – so always we need a cake (and who doesn’t want cake) and make a point of it.

35th: Which brings me to today. Today is special because I am here. I am celebrating not just another year, but one which has been more than challenging. But I can look back and know that I am loved. I feel James and I are at a wonderful, comfortable place, we have the kids and the house. That I now have everything I’ve ever wanted. I don't have the career, but that is ok. In time I can look down that path again. I also look at myself with a different light. Over the years I've obsessed about weight, looks etc. Now I look at myself and I want to be healthy. Being “fat” or pretty isn't important. Being comfortable in my skin, being healthy and fit is. Yes I'm a bit saggy (even more so after 2 weeks of bedrest); the steroids have made me puffy. And none of that is important.

So today I will have a large piece of cake and celebrate one more year, and look forward to many more knowing that there will be more challenges ahead. Nevertheless, I face them with the strength that the last few years have given me.

On the home front

It has been a testing time at home. Both James and I believed I'd be home in a few days, so we didn't make too many plans at first. Some friends helped with the kids and James took some carers leave from work. By the weekend it was obvious we needed help so James Mum came down for a few days which was great. We also managed to get the kids into daycare which was a financial stress but we needed to do it. They have been great, although Angus hasn't settled in too well.

The big news for Angus was that I had to wean him. I was so close to doing it, but obviously I wasn’t ready. He is my baby, I wanted that last feed. My boobs seemed to settled down ok, although I am still leaking two weeks on. And he didn't seem to notice. Sob. Unfortunately he has gotten more unsettled as the weeks have gone on. He really needs his mummy. It is so hard to see him for visits too. They really can't tolerate too long here but he just wants cuddles, then too look at the fishes. And he is changing so much. He is now so mobile. And talking! Here I was worried and now he says so many words (fish, strawberry, phone, plane, boat, car, cat, grandma the list goes on). And finally he says mummy!

Charlotte is also changing. Her language has improved, and she wants to be independent more now which is great. She has been sleeping in our bed though which isn't so great but I guess she is unsettled too.

Thankfully my Mum is here now and she is a stabilising force for them, so hopefully home life can settle down.

James has been so stressed, and there isn't anything I can do about it. But he has done so well so take care of the kids, the daycare, bills, et etc. as well as wean Angus!! I think he deserves a father of the year award!

A good reason for not posting

Sorry I haven't updated in a while – I have a good reason. We had a lovely Easter away, and I felt a bit better. However that week home the nausea and fatigue increased significantly. The Sat after Easter I woke up and the room was spinning. The next few days got gradually worse and I got to the point where I couldn’t stop vomiting. I was pretty desperate, I tried every drug I had and even some acupuncture (which suffice to say didn't work). I was nauseas, dizzy, had double vision, blurriness, and simply couldn’t move without vomiting. I also had a bad nystagmus, where the eyeball just flicks around involuntarily which was very unpleasant.

On the Wednesday I managed to see my specialist who admitted me to hospital. I had a rough night that first night. They had me on fluids but not much else, and nothing much was happening. The next morning I was a wreck and thankfully had a wonderful nurse who sat with me while I sobbed away and she got things happening. She spoke to my neuro-surgeon who ordered an MRI, my ENT, and an ophthalmologist review. They started me on dexamethasone, a very strong steroid, as they thought that there was swelling in the brain.

By the next day they had started me on epilim, an anti-convulsant, and I had seen a neurologist too. The Ophthalmologist cleared my optic nerve of damage which was a relief, and the MRI showed no bleeds but a lot of swelling. They all seemed a bit unsure what was happening – maybe swelling, maybe a migraine. Nevertheless, I was sick. At that point I was convinced I could come home once the drugs kicked in, but that didn't happen. The neurologist said it could take a week or a month and I was in shock. However over the weekend I deteriorated a bit more. I would wake up around 4am and start vomiting. I couldn't walk. I couldn't move my head.

Slowly things improved and by Monday I was starting to see some difference. It wasn't until the Wednesday that I could actually move without being nauseas. It was at that point I realised how sick I was, and sadly, that I had a long way to go.

From there it was just gradual improvements. Mornings are terrible – I get so exhausted just having a shower. But by evening the drugs have kicked in and I feel better I haven't been able to read or do too much until now so even if I had the internet I couldn't do too much. They doctors (I have seen 7 now) are still unsure what is happening. But the consensus is that there is swelling, probably from the radiation, or the tumour, or something. And that it would take time (weeks to months).

Right now I am torn when I come home. I am still so tired. I would need to rest and rest. I'm taking it one day at a time.