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!

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?

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.

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.

18^th (1995): My 18^th 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.

21^St: 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 21^st/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.

25^th (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.

28^th: 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.

30^th (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.

31^st: 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.

35^th: 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.