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!