There's no place like home......

How good does it feel to be home?? Very, very good! I know I've a lot of work ahead. It'll be a bit like it was when I came home from causeway hospital and when I first went up to RVH. I have to learn how to do everything again. Push myself, but not too hard.  Reduction in steroid meds again too, with further reduction next week. Yay! Still have to take them, along with anti seizure meds, but theyre nowhere near as heavy now.  My diagnosis remains fairly terrifying, but expected. Average grade 3 tumour but good chunk removed. The bit of 'spongy' removed was described to me by surgeon as 'big enough to fit my fist into'...... gotta be good to get that out! Plus other bits of 'angry peas' removed too. Happy days. Excellent job done by an amazing surgeon. One who took no crap from me but also had the skills to pull off what she promised she would. A bloomin genius!!  Next step is referral to oncology. Likely to be radiotherapy. We'll see. Stitches out next week too. That'll be good. It's getting itchy! Which means it's healing..... I don't want those stitches to knit in there....... I've met the nurse who'll remove them and she seemed lovely and very efficient. Apparently she's the stitch removal queen so I'll put my trust in her! Ridiculous the things you fixate on...... cut bits of my brain out but don't dare try to take a stitch out or put a cannula in! What a wimp 🙄 I do feel a bit like a pin cushion though..... my wee veins are feeling very sad 🤔 They are objecting to pretty much everything now! Not that I allowed anything to be put through them anyway. Not paracetamol, not even fluids. I can drink water, I don't need stuff pumped into me! I'm so happy to be home. In my own bed. Though I miss my Ward of Winners. Inspirational and so brave. They got me through the past 2 weeks - they showed me what I was capable of. Them and my wonderful sister. I miss her too but she doesn't live here and she has a job!! She's coming back at the weekend and I'm excited at the thought of seeing her again. Best sister ever!  I've got a series of other appts with people like Occupational Therapy, physio etc but generally everything seems good. I'm definitely ok to be home alone. I still have my elder care alarm (that I keep losing!). I might need a few grab rails fitted etc, but sure that'll just make the house ready for our later years!! I'm a bit vulnerable to burns etc as my reactions can be very slow. So I need a bit of monitoring, but I also need to do stuff on my own or I won't rebuild the Neuro pathways. So it's back to slow starts in the morning, showering on my own, making lunch, light housework, walks etc. I can be in public but I generally don't chose to be. I can be very odd about visitors. Be assured, it's not personal. I just get s but overstimulated and can get very tired. Plus I can get a bit overwhelmed. I cry quite often now...... horrible at the time, but definitely cathartic. I always feel better afterwards. So I just let the tears flow now. I sleep now thanks to my miracle priest! A man who helped me at a time when I genuinely thought I'd never sleep again. He's wonderful and I hope to go and visit him soon. I owe him so much. s I owe so many of you! Thanks again for all the lovely photos and all the funny texts/emails/whatsapps. They are the last thing I look at before I go to sleep and the first thing I look at when I wake up. They keep up my positivity and have stopped me from being beaten.  We had a few new arrivals to the Ward of Winners over the past few days. Good to see people moving on and getting home or onto the next stage of their journeys. They included one girl who seems to be on a similar journey to me. If I can provide even the slightest reassurance to her and/or her family then I will know I've achieved something. She's lovely and I know exactly how she must be feeling. She's had her first surgery and come through it well. I was delighted to see her back on the ward. I know she'll be ok, because I know I will be. Someday I've no doubt we'll share a cup of tea and help each other get over our experience together as well as celebrate our tenacity! She's as strong as an ocean and I have so much confidence in her ability to get through this. It's frightening for anyone, but the strong can fight through. She's a fighter - I can see it in her.  If anyone has any healthy eating advice then please send it to me! Im being told to eat plenty of protein and brightly coloured vegetables..... kind of what my body has been craving anyway! The other day for lunch I had sweet and sour with mashed potato, broccoli and carrot/parsnip..... the nurse laughed but then admitted I was the third person to order it! The body knows what it needs it seems......... I eat salad with basically every meal now too and have gone back to full fat milk (soothes a stomach that's unhappy from medications!) I've put on a few pounds but actually my weight isn't bad. I've no idea what it was before but it's not awful now. I'll worry about a few extra pounds at a later date...... hardly seems too important at the moment! One thing at a time...... to be honest I'd probably be more worried if I was losing weight, rather than gaining a bit......